# Rheumatoid Arthritis



## downesy (10 Sep 2013)

Just been diagnosed with this bugger. Two weeks into treatment and touch wood some sort of remission, in 2/4 months.
My consultant is adamant i will be able to carry on cycling in time i believe him,( i have to).
So what i want to know does anyone have any experiance, of cycling with rhuematoid arthritis


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## Mr Celine (10 Sep 2013)

Not rheumatoid arthritis but psoriatic arthritis, which is also an auto immune condition.
I had to give up playing football because of the state of the joints in my toes and a sore hip. After sitting around getting fat and feeling sorry for myself I bought a new bike and decided to try to wear my joints out before they self-destructed. Due to the state of my wrists and hands at the time I couldn't work the brakes on drop bars so got a spesh Sirrus. Once my fitness returned I found that when my hip was playing up a 30 mile ride did far more good than any amount of pain killers. 
After a lack of lasting response to 3 different drugs I was put on anti-tnf treatment, which is still working 5 years later. Due to the expense of the stuff that works they always try you on the cheap stuff first, which does work for some people, then move on to anti-tnf if no response. The treatment I'm on now apparently costs £10k a year. 
Once the hands started working again I bought a Roubaix. I had to get a bike that's tall at the front because damage to my neck makes it sore to lift my head up from a low position. I have to get bigger shoes to give room for my toes, which have fused joints and stick up at odd angles, then wear two pairs of socks to stop the shoes falling off. Apart from that arthritis has not affected my cycling. On the plus side I'm fitter and two stones lighter than I was 30 years ago.


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## downesy (10 Sep 2013)

Thanks for the reply, hopfully i can follow your tracks and keep cycling. I have pretty much accepted i wont manage my usual 5 day commute, but knowing your still out there putting in the miles, is agreat fillip thanks.


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## Biker Joe (11 Sep 2013)

A cyclist I know with rheumatoid arthritis swears that cycling is the only thing that keeps him going.


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## compo (11 Sep 2013)

I have had osteo-arthritis in my hips and knees for years and cycling is far better than pain killers to keep me mobile and reduce pain. I certainly know the difference when I don't ride for a couple of weeks. I dread what will happen when I can no longer ride. 

Worse still I have recently developed some deformation and swelling in my finger and knuckle joints, coupled with trigger finger. This thread caught my eye as I am going to see my doctor this morning about it. I am wondering if I am developing rheumatoid arthritis, especially in the light that my sister, three years older than me, had to have several knuckle and finger joints replaced a few years ago because of RA.

Must be the joys of getting old


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## downesy (11 Sep 2013)

Goodluck at the docs Compo, hope all goes well.
Or should i say hope it all went well, had hospital appointments al day, loose track of time.


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## Woody5110 (11 Sep 2013)

I also have Psoriatic Arthritis in my knee and hip and find that cycling eases any pain I have. (Mainly in the morning and when it's cold). Don't let it grind you down and keep going.


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## downesy (11 Sep 2013)

Thanks Woody i fully intend to,sadly due to illness and the time it took to get sorted out, i lost 2'5 stone.

I will need to build up weight and muscle first, at least i get carte blanch cake& trifle.:-)


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## Woody5110 (11 Sep 2013)

I didn't cycle before I was diagnosed but thought I would give it a go. I got a bike from the Cycle to Work scheme and a turbo trainer and built my base fitness up on that. ( I had to I got the bike in October).


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## roadrash (11 Sep 2013)

Do any of you take methatrexate . i was started on it a few weeks ago , i take 3 tablets once a week, im finding it completely floors me for 48 hours , like a really bad flu achy feeling,but fine after 2 days,be interested to know if it affects others, or maybe it could be an interaction with any of my other meds.i will ofcourse be asking my doc about on my next visit, but just wondered .


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## downesy (11 Sep 2013)

I have cycled pretty much all my life, and for the last 5 years have done the 20 mile round commute pretty much daily.
It may sound melo-dramatic but cycling is a huge part of my life, and the thought of loosing the hobby i love was a dagger to my heart.
Thankfully it seems it's a fear i need not have, posts from yourself and others above have really lifted me, and i thank youall for that


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## Woody5110 (11 Sep 2013)

I'm quite lucky at the min as I'm not on any meds for it. The downside is I know I will be eventually.


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## Woody5110 (11 Sep 2013)

downesy said:


> I have cycled pretty much all my life, and for the last 5 years have done the 20 mile round commute pretty much daily.
> It may sound melo-dramatic but cycling is a huge part of my life, and the thought of loosing the hobby i love was a dagger to my heart.
> Thankfully it seems it's a fear i need not have, posts from yourself and others above have really lifted me, and i thank youall for that


I commute as much as I can 12 miles each way and I do this 3 times a week and regularly do 30+ miles on a weekend. Keep positive and you will be fine I was the same when I was diagnosed you always think the worst. Cycling will help.


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## downesy (11 Sep 2013)

I do Roadrash very simalar symptons, and kills my taste for a day or two,why last week i had steps pn my cd.


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## roadrash (11 Sep 2013)

[QUOTE 2647779, member: 259"]Yes I do. Double that dose every weekend for psoriasis. I did get used to it, but it's pretty harsh medicine and it's the only things that really works for my psoriasis. I will have to stop taking it soon, as you're not able to stay on it permanently due to risks to liver etc.[/quote]


its psoriasis ive been given it for ,only asked here as i know its used for arthritis also, im only on my third week , up to 4 tablets next week and week after ,then back to dermatologist how do you find it works for psoriasis , ive tried every cream known to man ,4 seporate bouts of light therapy and acitretin ,but ive heard good things abot mtx (minus the side effects obviouly)

sorry to hijack the thread @downesy


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## downesy (11 Sep 2013)

No worries Roadrash , thats me also starting my third week on methatrexate.
It does knock you about a bit,but the rheumatologist swears by it.


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## roadrash (11 Sep 2013)

downesy said:


> I do Roadrash very simalar symptons, and kills my taste for a day or two,why last week i had steps pn my cd.


 

I just hope listening to steps isnt a side effect


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## roadrash (11 Sep 2013)

i certainly do know what you mean by normal , ive bought myself a pair of bibshorts , hope im not being too optimistic , im having blood test on a weekly basis for now i presume that covers liver function aswel, do you mind if i ask ,has it cleared or is it just more managable.


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## roadrash (11 Sep 2013)

[QUOTE 2647922, member: 259"]It's completely cleared for the moment, and it generally cuts it right back. I suffer mainly from P on my hands and feet and at it's worst I can't ride or run at all, at the minute Ifeel like I could take on a triathlon - but I'm not that daft

Good luck and I bet you've got good reason to be optimistic![/quote]


thanks mort,maybe light at the end of the tunnel , hope you stay clear


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## Mr Celine (11 Sep 2013)

Methotrexate on its own was the second treatment I was given. It did nothing for the arthritis, but did have a noticeable effect on the psoriasis, where some of the patches disappeared and the others reduced. For two days every week the methotrexate made me feel tired, sick and alterted my taste to the point that I could only eat fried or sweet food. It was basically a 2 day hangover without the headache or the pleasant pre-effects. On the plus side I felt a lot better generally, which I put down to the drastic cut in alcohol comsumption which I was told was necessary.

I'm on methotrexate again now, and have been for 5 years, because you have to take it with enbrel, the anti-tnf drug which I'm also on. I must have developed some sort of tolerance to it, because second time time around I've never experienced anything like the same side effects. Most weeks I don't notice at all, occasionally I feel a bit tired or get the munchies but that's about it.


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## Woody5110 (11 Sep 2013)

That's really interesting I didn't know you could use MTX to get rid of Psoriasis I thought it was just for the Arthritis. The only thing that reduces mine a bit is sunshine but soon as I'm back from hols abroad it's back again. I have tried everything to no gain.


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## lesley_x (12 Sep 2013)

I have a condition in the same family (sjogren's syndrome) and it causes havoc with my joints. Right now I need to take 30mg dhc and 1g paracetamol to walk the dog for an hour! It's not like rheumatoid arthritis where it damages and erodes the joints though, so they're two totally different beasts.

As no stranger to chronic illness, keeping active and not lying down to the disease is one of the hardest but most important things to get your head around. 

I'm a bit of a bugger though and when my joints play up I'll neck painkillers and keep going. Not sure what the rheumatologist would make of that


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## compo (12 Sep 2013)

compo said:


> I have had osteo-arthritis in my hips and knees for years and cycling is far better than pain killers to keep me mobile and reduce pain. I certainly know the difference when I don't ride for a couple of weeks. I dread what will happen when I can no longer ride.
> 
> Worse still I have recently developed some deformation and swelling in my finger and knuckle joints, coupled with trigger finger. This thread caught my eye as I am going to see my doctor this morning about it. I am wondering if I am developing rheumatoid arthritis, especially in the light that my sister, three years older than me, had to have several knuckle and finger joints replaced a few years ago because of RA.
> 
> Must be the joys of getting old



I went to the doctor who has ordered blood tests and sent me off for X-rays on my hands and fingers. I had the X-rays last night and the blood tests next week so wont know anything definite for a couple of weeks.


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## Biker Joe (12 Sep 2013)

compo said:


> I went to the doctor who has ordered blood tests and sent me off for X-rays on my hands and fingers. I had the X-rays last night and the blood tests next week so wont know anything definite for a couple of weeks.


I hope it all turns out well for you.


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## downesy (7 Oct 2013)

At last! went for my first ride today ( only 2mile ) around the village, in nearly 3 months.
It felt great to be back in the saddle,and so far no ill effects from the rheumatism.
I will try and build up week by week, then hopfully get back on the commute.
It seems( touch wood ) things may just be ok :-)


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## slowmotion (7 Oct 2013)

roadrash said:


> Do any of you take methatrexate . i was started on it a few weeks ago , i take 3 tablets once a week, im finding it completely floors me for 48 hours , like a really bad flu achy feeling,but fine after 2 days,be interested to know if it affects others, or maybe it could be an interaction with any of my other meds.i will ofcourse be asking my doc about on my next visit, but just wondered .


I do, together with hydroxychloroquine. I was diagnosed a year ago last April when I was in a very sorry state indeed. My wrists elbows, shoulders and knees all hurt like hell and I had to think really hard about crouching down to get stuff from low cupboards. I could barely get out of the car either. Anyway, I went to Charing Cross Hospital and they gave me a steroid jab in the bum which had a most miraculous effect. Unfortunately, they were only prepared to give me one and subsequently put me on methotrexate and hydroxychloroquine, ramping up the MTX dose over about eight weeks.
Due to the fact that MTX can damage your liver, I had blood tests everytime my prescription was repeated. I have been absolutely fine as regards side-effects, and am almost entirely pain free. Every now and then my right wrist aches a bit, but nothing that would stop me doing anything. I nip in for a blood test every two months now, and go back for an outpatients appointment every six months. They are really quite pleased with progress and are slowly reducing my MTX dose from 20mg once per week. It hasn't affected my cycling at all. I'm still rubbish.

All the best to you and downsey


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## compo (7 Oct 2013)

compo said:


> I went to the doctor who has ordered blood tests and sent me off for X-rays on my hands and fingers. I had the X-rays last night and the blood tests next week so wont know anything definite for a couple of weeks.



All results now in. Thankfully no RA. I do have osteoarthritis in a number of finger joints and some deformation of some of the fingers. I also have trigger finger in three fingers, two on one hand and one on the other. These are very painful, worse than the arthritis. I am having cortisone injections shortly. Previously these have removed the triggering completely even if the injection are flipping painful! It'll be one hand one week and the other a couple of weeks later. Longer term I will just have to see what transpires.


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## blamelouis (27 Jan 2017)

slowmotion said:


> I do, together with hydroxychloroquine. I was diagnosed a year ago last April when I was in a very sorry state indeed. My wrists elbows, shoulders and knees all hurt like hell and I had to think really hard about crouching down to get stuff from low cupboards. I could barely get out of the car either. Anyway, I went to Charing Cross Hospital and they gave me a steroid jab in the bum which had a most miraculous effect. Unfortunately, they were only prepared to give me one and subsequently put me on methotrexate and hydroxychloroquine, ramping up the MTX dose over about eight weeks.
> Due to the fact that MTX can damage your liver, I had blood tests everytime my prescription was repeated. I have been absolutely fine as regards side-effects, and am almost entirely pain free. Every now and then my right wrist aches a bit, but nothing that would stop me doing anything. I nip in for a blood test every two months now, and go back for an outpatients appointment every six months. They are really quite pleased with progress and are slowly reducing my MTX dose from 20mg once per week. It hasn't affected my cycling at all. I'm still rubbish.
> 
> All the best to you and downsey



Just been diagnosed myself with widespread RA not looking forward to it.
Be good to hear some good news stories.


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## oldwheels (29 Jan 2017)

My story is similar to blamelouis. I am on 200mg Methotrexate weekly with Hydroxychloroquine now being reduced to 200mg daily.This plus folic acid 6 days per week and B12 injection every 12 weeks. Now blood test every 10 weeks for liver,kidney function etc.Before this about 2 years ago I could not use thumbshifters to change gear which I can now. I cannot walk far due to spinal stenosis but I can cycle fortunately and this is about the only thing keeping me saneish.


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## lutonloony (10 Feb 2017)

Have ben diagnosed with RA for 10 years now. Am on third change of drugs (methotrexate made me feel like sh*it), now on Leflunomide. Occasional flare up , but couple of diclofenac take care of it. In the main cycling no probs (wrists get a bit achy sometimes) Stangely enough, have got a little touch of gout in left big toe. sideways twist to unclip is agony, but normal cycling OK


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## blamelouis (7 Mar 2017)

On sulfasalazine now 500mg four a day,week 6 now so hoping it kicks in soon.


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## lutonloony (7 Mar 2017)

blamelouis said:


> On sulfasalazine now 500mg four a day,week 6 now so hoping it kicks in soon.


Made my pee bright orange!


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## blamelouis (7 Mar 2017)

lutonloony said:


> Made my pee bright orange!


Same here mate.
Did it work for you?


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## lutonloony (7 Mar 2017)

blamelouis said:


> Same here mate.
> Did it work for you?


It worked for a couple of years, then had to switch as mentioned earlier


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## slowmotion (7 Mar 2017)

blamelouis said:


> Just been diagnosed myself with widespread RA not looking forward to it.
> Be good to hear some good news stories.



Don't despair! I've been on methotrexate and hydroxychloroquine for five years now. I don't have any side effects from the drugs. RA has no effect on my life at all. I'm still asked to have blood tests every ten weeks or so to check that the methotrexate isn't damaging my liver function ( it isn't yet ), and I'm still asked to go to an out-patients appointment every six months. I have only good news to report to the consultant.

Very best wishes.


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## lutonloony (8 Mar 2017)

slowmotion said:


> Don't despair! I've been on methotrexate and hydroxychloroquine for five years now. I don't have any side effects from the drugs. RA has no effect on my life at all. I'm still asked to have blood tests every ten weeks or so to check that the methotrexate isn't damaging my liver function ( it isn't yet ), and I'm still asked to go to an out-patients appointment every six months. I have only good news to report to the consultant.
> 
> Very best wishes.


The docs here make me do blood tests every 4 weeks, n the bright side it means I get a lie in before work


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## blamelouis (10 Mar 2017)

Has to be an upside lol.


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## slowmotion (10 Mar 2017)

lutonloony said:


> The docs here make me do blood tests every 4 weeks, n the bright side it means I get a lie in before work


I think that GPs like to have blood test results before re-issuing prescriptions for MTX. My GP gives me an eight week supply, so that's the blood test interval. BTW, I was mistaken when I mentioned ten weeks. Apologies.


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## lutonloony (10 Mar 2017)

Mine won't do more than 4 week script. Think my results might get a call from docs as I had a naughty weekend on the beer, due to birthday


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## downesy (14 Mar 2017)

Bloody ada i forgot all about this thread, i hope your all doing well and tbhe drugs are working.
I am on mtx 8 tablets on a sunday , sulfazine(sp) two a day, acroxia as a pain killer as and when needed.
As for myself my health ls great after the original6 months off work have been back for 3 plus years no issues.
Cycling is great no bothers at all commute most days20 mile round journey. Then weekend rides any thing between 10/100 miles.
So @blameloius stay positive listen to the doctors and hopefully you make a great recovery.. jezzo that was gobful.


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## downesy (14 Mar 2017)

Just to add i hope everyone on this thread are doing well. It can be a shocking diagnosis but with proper treatment and care, we can and do live a full painfree life All the best


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## blamelouis (10 Apr 2017)

downesy said:


> Bloody ada i forgot all about this thread, i hope your all doing well and tbhe drugs are working.
> I am on mtx 8 tablets on a sunday , sulfazine(sp) two a day, acroxia as a pain killer as and when needed.
> As for myself my health ls great after the original6 months off work have been back for 3 plus years no issues.
> Cycling is great no bothers at all commute most days20 mile round journey. Then weekend rides any thing between 10/100 miles.
> So @blameloius stay positive listen to the doctors and hopefully you make a great recovery.. jezzo that was gobful.



Good to hear


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## lutonloony (24 May 2017)

Left ankle Flair up! Can barely walk, yet cycling ok ( spinning, not pushing gears). All was fine until I realised that twisting foot to get out from pedals, was almost passing out pain. Fortunately lights were mostly kind on way home. Will se if anti inflamms have worked in morning


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## oldwheels (25 May 2017)

I got this lurgy which seems to be around just now. As I was away from home I stopped methotrexate as it interferes with immune system but dosed up on paracetamol to keep going temporarily. I had just been to the early arthritis clinic where the doctor agreed that I could stop hydroxychloroquine completely as an experiment. When I got home GP gave me prednisolone for 5 days then restart methotrexate when lurgy goes away. Generally after about 2 years condition seems to be improved but probably on methotrexate for life. Fortunately blood tests are reasonable so no side effects so far.


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## blamelouis (5 Jun 2017)

Still on sulfasalazine 2500mg a day rheumy says its working but im constantly sore not really painful but i know its there.
Might try diet changes quite a few people have got great results from sugar free dairy free and gluten free.


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## lutonloony (5 Jun 2017)

blamelouis said:


> Still on sulfasalazine 2500mg a day rheumy says its working but im constantly sore not really painful but i know its there.
> Might try diet changes quite a few people have got great results from sugar free dairy free and gluten free.


Apparently tomatoes are bad?.


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## blamelouis (7 Jun 2017)

Some say potatoes tomatoes and peppers...which are apparently nightshade vegetables are to be avoided.
I havent noticed any difference.


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## lutonloony (7 Jun 2017)

blamelouis said:


> Some say potatoes tomatoes and peppers...which are apparently nightshade vegetables are to be avoided.
> I havent noticed any difference.


To be honest, super tired seems to be a factor, food input no noticeable difference


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## vickster (10 Sep 2017)

Rheumatologist believes I possibly have early inflammatory arthritis (presumably RA as I don't have psoriasis) developing, just waiting to see him again for FBC, ESR and CRP results (and to see if the CT scan I had showed anything other than degeneration in my left foot). I've got stiff shoulders, bursitis in both hips, a sore right wrist and generally stiff, achy and knackered (probably as I'm not sleeping well and have mild anaemia). I've got degeneration in my foot, for which I've just had a steroid injection after continually increasing pain walking and at rest. Knees are a bit sore but they have wear and tear already. Weirdly I also seem hypersensitive

I'm taking a second course of oral prednisolone, also Celebrex and pregabalin, plus vit d and fish oil capsules. Still symptomatic and he's suggested methotrexate might be needed in future. GP has given me tramadol to help with nighttime pain and sleep which I take occasionally when I just need sleep

Like some posters above I don't really get the pain while cycling, which is good and I've been doing about hundred miles a week

Other than taking the meds, trying to stay active, I also need to drop a fair few kgs , does anyone have any tips to manage the pain and the fatigue. I feel pretty worn out, I put it down to work and cycling, but it seems a typical RA symptom. Physio? Hydrotherapy?

Thanks for any thoughts


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## slowmotion (10 Sep 2017)

I've been on methotrexate and hydroxychloroquine for five years now and it has kept the RA at bay. I was put on 20mg per week of methotrexate to begin with but that was reduced to 15mg about three and a half years ago. I still have to take a blood test every couple of months or so before they will renew to prescription for methotrexate. I'm also supposed to have eye tests every couple of years because hydroxychloroquine can damage your eyesight. So far, I've been free of side effects and my annual visits to the consultant have gone very well. Of course, it could all go belly up at any time but I've been very lucky so far.


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## lutonloony (10 Sep 2017)

I think the fatigue is a result of the pain. If I have a flair up I don't sleep .Mrs LL always knows if I am in pain because I become a real arse ( more than usual!) Metharexate made me feel awful, but I am on lafludomide, but many peeps find it fine. I also have Diclofenacs as back ups. My rhuemy podiatrist also diagnosed me as having gout!


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## blamelouis (13 Nov 2017)

I hope everyones doing well .


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## lutonloony (14 Nov 2017)

blamelouis said:


> I hope everyones doing well .


I keep forgetting about this thread.
Latest update. Allopurinol seems to be holding gout at bay although TBH I probably only get an episode every 4 months, so may be a long term wait and see. RA to n the main seems under control. Had a steroid injection in right ankle as one of the tendon sheaths was very inflamed, causing much probs when cycling. Don't know if I need to declare my drug use and get an exemption form before gong on Sunday club runs  
Hope all others doing well


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## lutonloony (14 Nov 2017)

As an aside, does anybody take, turmeric and or ginger. Have heard of their bebifits, but not sure given the amount of drugs I'm banging in I would notice any benefit , and not willing to drop them all on the chance the natural meds would work, guess they couldn't do any harm though


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## oldwheels (14 Nov 2017)

Turmeric as I recall does not go well with some drugs you may be on. Better check that. Don’t know about ginger.


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## lutonloony (14 Nov 2017)

oldwheels said:


> Turmeric as I recall does not go well with some drugs you may be on. Better check that. Don’t know about ginger.


Thanks for heads up. More time needed on t'internet


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## Andrew_P (14 Nov 2017)

I being tested for some pretty grim auto immune diseases. Blood tests due back Thursday (its been a long ten days I can tell you) Although my major symptoms are sinus and respiratory I am now getting swelling of all my bendy joints and redness over all my joints which Dr Google suggest is a sign on Rheumatoid Arthritis? Pretty stiff everywhere too.


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## lutonloony (14 Nov 2017)

Andrew_P said:


> I being tested for some pretty grim auto immune diseases. Blood tests due back Thursday (its been a long ten days I can tell you) Although my major symptoms are sinus and respiratory I am now getting swelling of all my bendy joints and redness over all my joints which Dr Google suggest is a sign on Rheumatoid Arthritis? Pretty stiff everywhere too.


Even before my drugs I use to get major flair up of arthritis mostly in one joint at a time. If you really have RA in all at once I feel your pain, and hope they get on it ASAP


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## Andrew_P (14 Nov 2017)

lutonloony said:


> Even before my drugs I use to get major flair up of arthritis mostly in one joint at a time. If you really have RA in all at once I feel your pain, and hope they get on it ASAP


 Feet toes ankles knees fingers and elbows literally blush red over the joints minor swelling most bizarre thing I have seen I was only asked 2 weeks ago if I had this symptom and I didn't Only stiff, feels like been down the Gym the redness was the worry really. Hope to find all my blood tests were negative to be honest and go on from there.


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## lutonloony (15 Nov 2017)




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## blamelouis (15 Nov 2017)

Andrew_P said:


> I being tested for some pretty grim auto immune diseases. Blood tests due back Thursday (its been a long ten days I can tell you) Although my major symptoms are sinus and respiratory I am now getting swelling of all my bendy joints and redness over all my joints which Dr Google suggest is a sign on Rheumatoid Arthritis? Pretty stiff everywhere too.


I had a lot of sinus problems for years ..stopped dairy products cheese yoghurt and milk about two months ago and theyre gone.
I take a calcium supplement instead


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## blamelouis (15 Nov 2017)

I dont think the sulfalasazine is doing much now 10 months later...sore knee and feet make it hard to walk at moment and if it wasnt for celebrex i wouldnt be able to work.


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## vickster (15 Nov 2017)

Andrew_P said:


> I being tested for some pretty grim auto immune diseases. Blood tests due back Thursday (its been a long ten days I can tell you) Although my major symptoms are sinus and respiratory I am now getting swelling of all my bendy joints and redness over all my joints which Dr Google suggest is a sign on Rheumatoid Arthritis? Pretty stiff everywhere too.


RA can affect the lungs, heart, eyes and other organs as well as the joints, just less commonly

Have you seen a rheumatologist or ENT?


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## Andrew_P (15 Nov 2017)

vickster said:


> RA can affect the lungs, heart, eyes and other organs as well as the joints, just less commonly
> 
> Have you seen a rheumatologist or ENT?


Been misdiagnosed for years with atypical facial pain. had a constant runny nose for years, and I mean constant. that was diagnosed as unknown allergies. Seen loads of consults. Immunology suggested my swelling facially was Rosacea so my GP sent me to a Dermatologist. She spent 10 minutes looking at my skin with a massive magnifying glass and then started to ask me lots of completely non skin related questions such as rash and swelling elsewhere, stiffness my dental history (which has been awful in the last 3 years) The sinus symptoms and pain and my eyes swelling. She then wrote to my GP (Private referral form my GP they seem to know each other) using a word a had to Google destroyed capillaries in my face I can't see them but I have a butterfly rash. Requesting loads of blood tests unrelated to skin disorders and also seemed very critical of NHS immunology writing off some unusual blood tests as due to Inflammation.

She is focusing in on Autoimmune diseases but mainly Churgs Syndrome and GPA, which I can't deny is scaring the life out of me.


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## vickster (15 Nov 2017)

Sounds like the derm I saw at Parkside (referral from rheum)

Hope you get some answers soon. It is probably as bad not knowing


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## lutonloony (15 Nov 2017)

blamelouis said:


> I dont think the sulfalasazine is doing much now 10 months later...sore knee and feet make it hard to walk at moment and if it wasnt for celebrex i wouldnt be able to work.


I stayed on sulphasalazine, worked for a while, but then had to change


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## blamelouis (23 Nov 2017)

lutonloony said:


> I stayed on sulphasalazine, worked for a while, but then had to change


To methatraxate? Did it work mate?


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## lutonloony (23 Nov 2017)

blamelouis said:


> To methatraxate? Did it work mate?


I switched to methatraxate, it worked in as much as it seemed to keep the RA at bay, but it made me feel so bad generally that I asked to be taken off it. I was on the self injection type. Just one of those things that it didn't agree with me, but many have no problem.


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## lutonloony (23 Nov 2017)

3 steroid injections into right foot, due to inflammation of tendon sheaths. Hopefully will be able to start getting out on club runs again. ATM I can just about manage 8 mile commute, although not allowed to ride til Monday now


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## SpokeyDokey (14 Dec 2017)

Andrew_P said:


> Been misdiagnosed for years with atypical facial pain. had a constant runny nose for years, and I mean constant. that was diagnosed as unknown allergies. Seen loads of consults. Immunology suggested my swelling facially was Rosacea so my GP sent me to a Dermatologist. She spent 10 minutes looking at my skin with a massive magnifying glass and then started to ask me lots of completely non skin related questions such as rash and swelling elsewhere, stiffness my dental history (which has been awful in the last 3 years) The sinus symptoms and pain and my eyes swelling. She then wrote to my GP (Private referral form my GP they seem to know each other) using a word a had to Google destroyed capillaries in my face I can't see them but I have a butterfly rash. Requesting loads of blood tests unrelated to skin disorders and also seemed very critical of NHS immunology writing off some unusual blood tests as due to Inflammation.
> 
> She is focusing in on Autoimmune diseases but mainly Churgs Syndrome and GPA, which I can't deny is scaring the life out of me.



@Andrew_P 

How are you getting on now? Any progress re a diagnosis?

Your post stuck in my mind since I read it a while back - I think it was the Churgs Syndrome bit that registered with me as I'd never heard of it before.


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## Andrew_P (15 Dec 2017)

SpokeyDokey said:


> @Andrew_P
> 
> How are you getting on now? Any progress re a diagnosis?
> 
> Your post stuck in my mind since I read it a while back - I think it was the Churgs Syndrome bit that registered with me as I'd never heard of it before.


Thanks for asking! Nothing conclusive, borderline ANCA test first one was lower. All other blood tests they did for autoimmune (10!) came back normal. My IgM is still high, which consultants view varies on from due to the swelling or like the last consultants view that my immune system is doing something/fighting as it is your bodies first line of defence. I think ultimately they will have to biopsy my Sinus, which I may arrange privately. 

I think the joint pains and swelling on this post was due to the high dosages of Cortisone Steroids I was on, and tapering off too quickly. 

Waiting on an appointment for St Johns institute which I have now but for the 3rd of April, which I cannot believe and I am going to try with my GP to get that improved. Cannot even circumvent it privately as apparently nowhere else like it in the UK. Been the worst year of my life since the swelling randomly started, made a lot worse by no one having a clue what is causing the symptoms and long waits in the NHS. The sensations in my facial\sinus area are unbelievable when its going mad and then it can be agony. 

When I looked at both the things she focused on, my symptoms over the last 5 years have matched, so I can see her conclusion plus a birthmark type rash on my neck that I ignored for the last two years according to this lady is a Photosensitivity rash, also a sign of Autoimmune problems apparently.

I had never heard of any of this stuff before, and if I am honest always thought nothing much about autoimmune diseases being quite as serious. I still believe I have a sinus issue, but they don't!


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## SpokeyDokey (15 Dec 2017)

Andrew_P said:


> Thanks for asking! Nothing conclusive, borderline ANCA test first one was lower. All other blood tests they did for autoimmune (10!) came back normal. My IgM is still high, which consultants view varies on from due to the swelling or like the last consultants view that my immune system is doing something/fighting as it is your bodies first line of defence. I think ultimately they will have to biopsy my Sinus, which I may arrange privately.
> 
> I think the joint pains and swelling on this post was due to the high dosages of Cortisone Steroids I was on, and tapering off too quickly.
> 
> ...



What a frustratingly slow process.

Good luck and I hope next year gets you a good resolution.

Hopefully some better news from you in 2018!


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## Andrew_P (16 Dec 2017)

SpokeyDokey said:


> What a frustratingly slow process.
> 
> Good luck and I hope next year gets you a good resolution.
> 
> Hopefully some better news from you in 2018!



Sorry RA sufferers last post from me as off topic on here but just to update the much maligned by me NHS performed and I have no clue how or why. 

Almost as if by magic, having got to see my GP yesterday as I woke up and was looking and feeling like I had just done ten rounds as a punch bag and my GP saying doesn't think they can improve the appointment and giving me an industrial dose of Steroids out of the blue had a text message late yesterday another appointment was given to me at the Urticaria\Angioedema dept at St Thomas this one for the 4th of Jan. Not even the GP has any idea why or how.


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## blamelouis (22 Dec 2017)

HAPPY XMAS to all my fellow stiffs.
May your swelling be temporary and your relief long term


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## vickster (4 Apr 2018)

Anyone out there taken/taking hydroxychloroquin? Just started and wondering what anyone’s experience has been (esp. regarding effect on vision)


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## oldwheels (7 Apr 2018)

I was on hydroxychloroquin a couple of years ago. Advice was if any pain behind the eyes to get to a doctor ASAP as you can go permanently blind. I had no problems with it so cannot comment further. Went on eventually to methotrexate but thankfully while the RA is still there it is manageable without methotrexate which has possible side effects worse than RA. The joys of ageing.


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## vickster (7 Apr 2018)

oldwheels said:


> I was on hydroxychloroquin a couple of years ago. Advice was if any pain behind the eyes to get to a doctor ASAP as you can go permanently blind. I had no problems with it so cannot comment further. Went on eventually to methotrexate but thankfully while the RA is still there it is manageable without methotrexate which has possible side effects worse than RA. The joys of ageing.


Thanks. Not seen anyone since starting it. Eyes seem ok but I have been headachy which is a common side effect apparently.
I don’t have an RA diagnosis but ‘possible inflammatory arthritis’


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## blamelouis (10 Jan 2019)

Really stiff this last while back might need another med change.


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## blamelouis (4 Nov 2019)

Any methotrexate users on here...starting to feel I might have to take the plunge.


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## roadrash (4 Nov 2019)

I have used it but it was to treat psoriasis, which it did brilliantly, but also gave me high blood pressure so doc took me off it, cant have it again


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## Mr Celine (4 Nov 2019)

blamelouis said:


> Any methotrexate users on here...starting to feel I might have to take the plunge.


Been on it for nearly 12 years continuously in conjunction with etanercept.


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## slowmotion (4 Nov 2019)

Two of the unfortunate consequences of taking methotrexate are that you are not allowed to donate blood or attempt to have children. I'm not in the slightest bit concerned about the latter, but I would dearly love to give some blood to the NHS. I owe them for stuff they have done for me.


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## slowmotion (4 Nov 2019)

blamelouis said:


> Any methotrexate users on here...starting to feel I might have to take the plunge.


Sorry, I just spotted your post. I've been on it for nearly eight years without any side effects at all. My RA symptoms vanished within a couple of months of being prescribed it (and hydroxychloroquine).

I hope all goes well.


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## blamelouis (7 Dec 2019)

That's really positive cheers 👍


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