Hi

I am just popping in to say hello. I have had RA since 1998, also SPMS & Scleroderma, so a nice mix of autoimmune diseases!! RA is the worst at the moment. On Methotrexate but its not doing it's job anymore! Had a perforated ulcer due to Voltorol 2000 & have had Sulphazalazine, any advice on what else they may offer on next months appointment? Thanks

42 Replies

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  • I have tried methotrexate and am now on sulfasalazine and Hydroxychlorine with prednisolone. Hydroxychlorine has been good for me.You might be offered biologics. I have tried 3 but didn't work for me but some get on great with them

  • Thanks for replying I have limited choice due to MS drugs & interactions. I see the rhematolgist in a few weeks so I'm hoping they can suggest something compatible. I've had steroid in both shoulders recently but no improvement .

  • There are lots more different DMARDS so hopefully your rheumatologist can help you more.Life can be so cruel dishing out all these diseases

  • It is! I'm lucky really, considering my MS is progressing I am a walking wounded so to speak. The RA is the devil at the moment!!

  • Hi there. Sorry to learn of your mix - must be so hard to juggle.

    I have a very MS-like presentation of primary Sjögren's that was initially diagnosed and treated as RA.

    Having tried four DMARDs including MTX, Sulfasalazine, Hydroxichloraquine and Azathioprine, I am presently on the maximum dose of Mycophenolate - 9 months now.

    I don't know if it's helping with my neuro symptoms as they seem to still be quite bad - but it seems to have got on top of the inflammatory arthritis quite well at least. I'm under a Scleroderma doctor and the pattern of my positive ANA points to Scleroderma or Polymyositis so Mycophenolate is the main DMARD for these and also for Vasculitis.

    Azathioprine gave me a rare but severe side effect of pancreatitis - but I believe it is also very effective for many with these diseases so this might be next option for you perhaps?

    I am told that my neuro type of Sjögren's won't be helped by Rituximab because of the MS-like symptoms which it could make worse. So if MMF doesn't work or if I can't tolerate it then there's nothing else I can try I'm told.

    But for you I would have thought Azathioprine or Mycophenolate would be a good option for Scleroderma but may not be enough to modify your RA - depending how erosive it is.

  • You are the 1st person I have found that knows what Scleroderma is!!!! Most nurses have to ask me what it is as they have never heard of it!!! Even my Dr had to look it up!

  • Scleroderma is a really serious but rare connective tissue disease and my doctor specialises in it. I take it you are on the Raynaud's and Scleroderma HealthUnlocked community for this? X

  • No but I am being treated for Raynauds via ms consultant. Devil & the deep blue sea, which to treat 1st!!

  • You could get really good advice from the Scleroderma and Raynaud's community for your Scleroderma at least?

    I do know of several people who were diagnosed with MS but it transpired they had Sjögren's instead - same with Lupus.

  • Mine is definitely MS. My MRI lit up like a christmas tree apparently. I had to have chemo due to very aggressive relapses. I am now looking at a spinal nerve stimulator for the neuropathic pain. All other drugs haven't touched it, even opiods. I do do use a drug, but it is as yet illegal. The do not prescribe Savinex very often unfortunately. I really have tried everything else.

  • Oh snap - my brain MRI lit up too but for small vessel disease of Sjögren's. I too have a terribly painful neuropathy that nothing has touched.This is what I now take Mycophenolate for.

    Here's a link that explains what I'm referringto re overlap. Both diseases can be equally debilitating and progressive but they have very different processes underlying them. Those with MS can share the Sicca as part of the neuropathy.

    hopkinssjogrens.org/disease...

    Does your Scleroderma make your skin hard and shiny or is it not that advanced? Has it affected your organs at all? I do hope you have a good rheumatolgist who knows about Scleroderma? Mycophenolate is mainly used for renal patients because it's an anti rejection drug for kidney transplant patients, but it's also often used for people with lung and nerve involvement with Lupus, Vasculitis and occasionally for Sjögren's.

    I do have some early renal involvement but I don't have very severe Sicca at the moment so I'm lucky in this respect.

  • I have swallowing difficulties & bowel problems due to scarring of the soft tissue in regard to the Scleroderma, the MS causes the muscles to stop working effectively so they are working in conjunction with each other! & my skin is affected, I can't bend my left knee because it is very tight behind the knee. My consultant is not that familiar with Scleroderma, although he has been getting info on it. I am struggling with the RA at the mo, I need crutches to walk with, but my hands, elbows & shoulders are really bad at present, I have got drop foot as well, so as you can imagine, I am struggling to get around. I don't want to use a wheelchair all the time, it doesn't help with the neuropathic pains in my legs sitting too long, & as I can't bend my left knee, everything is a bit uncomfortable. I'm just having a moan to be honest, sometimes it does you good to talk to people who know!! I'm not a misery, honest!

  • I think you're having to be very brave - even 2 autoimmune diseases are turning my life inside out let alone 3! But I really think you need to be under a rheumatolgist for the RA and Scleroderma as 2 out of three of your autoimmune conditions are rheumatic diseases and need specialist input - not an MS specialist alone? This concerns me for you a bit I admit.

    I have similar issues with bowels and swallowing - just been referred by the Scleroderma doctor to gastroenterology for testing to see what part of my Sjögren's is causing this - the dryness or the neurological side of it.

    Re mobility - I lose my balance a lot due to numbness in my feet and face so have a stick but now have had to buy one that unfolds into a seat because of osteoarthritis in my spine meaning I can't stand for longer than 30 seconds. It's quite comical the way my symptoms morph no sooner do I adapt to them!

    My OA is least of my worries most of the time as long as I can keep mobile through Pilates and walking the dogs everyday. I'm saving up just now for a good rotator to use as a seat and a walking aid. My small house is becoming full of props for all occasions!

    Worst of all though is the relentless fatigue. Ugh this annoys me because all around me are those with such high or normal energy levels and they don't get it at all! Planning a day out with family or friend has become a complete nightmare!

  • Oh the fatigue is horrendous isn't it?!! I don't sleep either due to the leg pain, vicious cycle. I know what you mean about the equipment, hence reluctance to use a wheelchair in the house. I do have 2 rheumatolagists as well as MS consultant, seem to spend most of my time between appointments!!! If I can reach a level of pain relief with the RA I'm sure I could cope a little better, I've managed quite well up to recently, I have had pains from MS & Scleroderma for a long time, but the RA is quite bad now.

  • You should be under both kinds of specialists for two equally serious diseases and they should take a multi disciplinary approach as mine do?

  • Oh, I am well looked after. I am under an MS consultant & 2 Rheumatologists, 1 knows more about Scleroderma than the other. I'm also under a specialist pain clinic so I can't complain.

  • Oh that's very reassuring to learn. I was in hospital with a woman with advanced Scleroderma - she looked bright as a button but explained she was in for double pneumonia and a pulmanory embolism. She had suffered heart failure and had advanced Lupus kidney disease.

    She said that most rheumatologists, including ours, only know about RA.

    I relocated twice after that and was finally rediagnosed by lip biopsy last year. Immediately they focussed on my brain, lymph glands and nervous system and have done ever since. Until then it was all about my hands joints and swelling - no interest in the painful neuropathy affecting my entire body including my mouth nose and left eye!

  • They tend to do that! Took ages to convince them about the skin behind my knee! It's very noticable now. Good job they found the scaring in my throat to be honest, at 1st they didn't know what it was, until 1 rheumatologist suggested it was directly linked to Scleroderma. The rest is history so to speak!! I was dx with it 5 years ago, approx

  • Ach it's frustrating that they need convincing sometimes isn't it? Lots of things get presumed with me and they just say "well of course you can't swallow well - you have Sjögren'sso you have no saliva!" Or "of course you are always fatigued - you have Sjögren'sso your body is constantly battling inflammation". But, having things presumed rather than confirmed doesn't suit me well. I need them to be certain because I've already had my diagnosis changed twice. I need them to work hard to earn my trust these days!

  • Think they just like plucking things out of thin air sometimes, we are enigmas, or so I've been told!!!!!

  • Hope you don't mind me asking, are you in the UK? The USA seem to have more knowledge on Scleroderma, I know where I live they don't!!!!!!

  • No I'm in Dundee in Scotland.It's the second biggest Scleroderma centre in the UK. The first is the Royal Free in London - led by a chap called professor Chris Denton. Mine is called Dr Colin Baines. Here's a link to him talking about Scleroderma to medical students.

    medicine.dundee.ac.uk/event...

  • Wales, lovely lamb, but no idea about Scleroderma!!!! I've been passed from pillar to post for years with this, dx with MS in 4 days!!!!!! Usually takes months/years!!!

  • Well if it's any consolation MS is very well understood and recognised compared to my disease. I attendedan NRAS group event the other day and the very nice rheumatology helpline person said "oh so you have Lupus then do you" when I said my neuro symptoms are the biggest problem.

    So I replied "no my main disease is now thought to be Sjögren's". "But that's really just dry eyes and mouth isn't it?" Grrrr well why didn't someone tell my body that then?! When i told an American sufferer about this comment they responded; "but is there a rheumatic disease with a better charted and recognised neurological dimensiin than Sjögren's?"

    Well This may be the case in US but here in the UK most doctors haven't a clue!! 🙄😎🙃😉

  • Nope, not a clue!! Mind you, MS specialists tend to 'textbook' everyone, if you don't have this, or no, you shouldn't have that, unless they've actually got the illnesses, how would they know?!!!!

  • Oh yes - this has been my experience of neurologists too. My present one told me that I was "over thinking everything" and looked too well to have much seriously wrong with me the first time I saw her. My husband muttered "that's what they said last year and it turned out she had sepsis!".

    The second time I saw her I had just been diagnosed with Sjögren's and couldn't walk in a straight line - felt stoned etc and she said "you have Sjögren's so yes you must expect that you have permanent damage to your tiny nerve fibres and autonomic dysfunction - we can only treat this symptomatically with Pregabalin though" - hang on you want to try and land another drug on me which alters my brain pathways while telling me that they will have to be guided by my own account of symptoms to know how the disease is progressing? Ugh! They seem a very literal lot who dismiss anything they can't understand. The Scleroderma doc and my rheum were far less dismissive.

  • They love handing out sweeties, love it! I'm getting very sick of taking mine to be honest. If I could control the pain would be lovely. I'll cope with the rest. Nice to converse with someone who knows!!!

  • Oh it's been really good for me to let off steam to someone with such a rare combination - makes it so much less isolating - off to try and sleep now! X

  • It is & thank you! My hubby says I'm rare, not sure it's a compliment 😂!!

  • My husband is snoring beside me right now. I think he'd say that keeping up with my health problems is a full time job of itself just now! Oh well if you can't beat em...😴😴

  • I would really think Mycophenolate might be worth asking about for you - it's the first one I've toleratedwell and most people with Scleroderma seem to think very highly of it as a disease modifier.

  • Thanks for that, really appreciate all the info you have given me!! Don't feel quite so alien now!😂

  • I know the US is greatly advanced on this country for Sjögren's.

  • Yes they are. I did try & research a bit, but some of the reading scared me to death, MS is bad enough, but I thought better of looking at this because it seemed not a lot of people knew what it was!!!! Thanks for the link, I will have a look tomorrow.

  • healthunlocked.com/sruk

    For support from others with Scleroderma - you can join as many communities as you like btw.

  • Just read this! Thank you so much again!

  • You're very welcome. I think that those of us with rare diseases or rare combinations need to support each other, even when our exact diagnosis differ. It's the symptoms and treatment options and self management which connect us even more than the actual diagnosis I think. 😊

  • It is & being unique!!!

  • It's a begger isn't it?! I had a perforated ulcer a few years ago so I can't take the usual antiinflammitries either. Nightmare. Thanks for all the info I will put that to them. Sounds like your going through it as well.

  • Well my GPs know about Scleroderma but have never heard of primary Sjögren's - let alone one that presents like MS! Maybe we should swap so they can learn more about both diseases?!

    I have to say that life was much simpler when I was just diagnosed with RA and hypothyroidism - both of which almost everyone has heard of.

    It's a lonely business being rare and complex. Currently struggling with painful finger tips which I'm told by the Scleroderma doctor aren't a true Raynaud's but are actually small fibre neuropathy with nerve damage possible Vasculitis. Think this is chilblains maybe? All I can make out is little flat burn like blisters like nettle rash and splinter haemorrhages running down some of my nails - but boy it's sore to type!!

  • Nothing like a little challenge lol 😂 I do not think you can do Biologics with MS. That has to be very difficult indeed. What do you treat MS, RD and ....

    It makes the challenge of one illness seem like child's play. I certainly hope they can help you soon. How do you treat both?

  • Hi, I am a cocktail for MS!! Lamotrigine is 1 of the main 1s at the mo, but is getting ineffective now, nature of the beast unfortunately.

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