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inkedup

Multiple autoimmune syndrome 2

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Hi,

 

It's been a long time since I posted here!

 

Unfortunately over the past year I have developed Primary Biliary Cirrhosis, on top of scleroderma/Sjogrens and autoimmune thyroiditis, so I have 4 autoimmune conditions, which is pretty rare. I am also developing a lot of osteoarthritis, and this has been painful in my lower back. I keep being unwell, and on top of this have had huge stress problems which are making me feel very depressed.

 

Is there any medications I should suggest? There was talk of medications to dampen down my immune system, but I think that I have been lost in the system. I also have pulsatile tinnitus; could this have any autoimmune connections?

 

Thanks!

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Hi Inkedup,

 

It might be a good idea to discuss your treatment options with your scleroderma expert. There might be an appropriate therapy for you now, or your doctor might also discuss saving the "big guns" for when you have a specific major issue to deal with.

 

As I understand it, pulsatile tinnitus usually indicates a vascular problem, sometimes a serious one, and thus it is evaluated and treated by vascular surgeons.

 

You might want to pay serious attention to dealing with stress and everything that entails, because the effects of stress can really complicate our illnesses and healthcare. With chronic illness, the only thing we are really guaranteed is more and more stress and more and more sources of stress.

 

To remain resilient -- and thus functional -- most of us need to tap every resource possible to maintain our sanity, good graces, and sense of humor. The thing I like most about stress is that our perception of it and how we choose to handle it is largely under our own control.  We can elect to find good counselors and take medications that reduce depression or anxiety.  We can learn biofeedback, practice meditation, study cognitive behavioral therapy, indulge in music or art therapy, develop new hobbies, find new friends -- why, the list of things we can do to enhance our lives through stress reduction is nearly endless!  See Causes of Scleroderma: Stress.

 

For an idea of the wide array of treatment options, please see Scleroderma Treatments and Clinical Trials.  Also look up your illnesses and symptoms on our main Scleroderma Symptom List, as there may be additional options for those particular items.

 

:hug-group:

 


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Inkedup,

 

How lovely to hear from you again, although I'm sorry that you've been having to deal with more autoimmune problems and the constant pain of osteoarthritis.

 

As Shelley has suggested, you may need to go back to your scleroderma specialist to discuss some treatment options with you.  I do understand how easy it is for the NHS to "lose" you in the system; I've found that it's necessary to be on their case the whole time and very insistent in order to get things moving (a tenacious and determined personality is often required! :wink:)

 

Unfortunately, stress of any kind is the very worse thing for autoimmune conditions; I know it's sometimes hard to to actually be able to do something about it and reduce it, but it does exacerbate all your symptoms, so if you can find someway to alleviate some of the stressful situations from your life, it must help you.

 

Please do have a look at the links Shelley has suggested and do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi, I'm new to this post.

 

I have 3 autoimmune diseases. Sclero, lupus and RA. I also have ILD and mild neuropathy. I'm in quite a bit of pain, especially in my hands, shoulders and feet.

 

My question is, how many times can remission happen and how long does it take to get there? I was in remission for 12 years and now it's all full blown and I just want it to go into remission, so I can get on with my life.

 

Can anybody give me an answer please?

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Hi Valgee,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with three autoimmune diseases and are experiencing such unpleasant symptoms.

 

Many autoimmune diseases, including scleroderma, tend to wax and wane and do stablise and go into remission for a while. However, because these diseases vary so much from person to person, it really is quite difficult to predict the course of the disease.

 

I've found another thread on Remission, which I hope will help to answer some more of your queries and prove interesting to you. 

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Its been over 2 years since my severe symptoms began, so I live in hope of some remission in a year or two.

 

My understanding is that once the vascular damage has been done, its done and there can be no remission from that.

 

Can anyone confirm whether their vascular symptoms actually improved in remission?

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I can't confirm this yet I'm afraid as I've still got six weeks to go until I meet the Vascular Medic for a nailfold capillaroscopy test. But I will ask him about this.

 

I have a very similar mix to yourself but Sjogren's is my most acknowledged CTD and is always active and causes small fibre neuropathy, amongst other things. I have been on Cellcept/ Mycophenolate for 3 months now. It has helped with some things but not with tinnitus, GI problems at both ends, Raynauds - and I have new skin issues.

 

I was previously diagnosed and treated for RA and have Hashimoto's Hypothyroidism and now being investigated for possible Scleroderma.

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I have had multiple autoimmune diseases for many decades, and I have had the symptoms of nearly all of them wax and wane over the years, with what you might call repeated "remissions".  Sometimes the improvements occur on their own, without any special treatment, but sometimes they are inspired by treatments. 

 

Often, many of my autoimmune diseases relax their grip at once, allowing for some of my more pleasant interludes. Therefore, I never give up hope that something -- anything -- might improve any minute now, or any day now.

 

I believe that hopefulness, and gratitude, are essential to helping trigger a relaxation response, which helps our bodies create more helpful neurotransmitters than those triggered by worry and dread and negativity. So in addition to medical treatments, I find it helpful to focus on anything that will help uplift my attitude: music, art, friendship, comedy, work, nature, floating, activity, faith, pleasant aromas, touch, pets, hobbies, singing, tasty and nutritious food.  In other words, letting ourselves be open and nourished by life in all its glories, instead of drained by it.

 

Many medical treatments for autoimmune diseases are more like shotguns than bullets. That is, they affect the entire immune system, and not just one little bit of it.  Various issues, including so many overlaps, make a lot of treatments contraindicated for me. But still, I've had many benefits, and what you might want to call stabilization, waning, or (more loosely) remission, from things like plaquenil, UVA1, and IVIg.

 

To me, there always seems to be a certain emotional danger to autoimmune disease.  That is, we can get so focused on pursuing a remission that we forget to focus on all the natural ways that we can improve our mood and our lifestyle. It is easy to look only towards medical treatments for improvements, whereas, I think we need both oars in the water to make any worthwhile headway living with autoimmune disease.

 

I like to continually be on the lookout for ways to increase joy and relaxation in life, because they are part of the stew that helps make our treatments (or even the lack of them) work most effectively.  Plus, if any particular treatment fails, how bad is it really, if we've still managed to increase our joy and satisfaction with life, along the way?

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I have to say, that I have never had any waxing or waning of the conditions, just a gradual deterioration, and more gathering of more autoimmune conditions once I had got into my early 40's.

 

It has all got so bad, and I've been feeling so unwell over the past few months that I had to stop work.

 

On top of this, I was a very busy person, having graduated with a 1st class degree, and diplomas. It is really really depressing having to rely on benefits, and people treating you like you are stupid, as you are depressed and lethargic.

 

I saw my rheumatologist on Thursday, where I am also part of a Scleroderma research group (interesting to see your fingernails under the microscope!) I explained that I was feeling absolutely terrible, exhausted with pretty bad joint pain, and they have decided to put me on Plaquenil. As it takes a while to work, I also had my first steroid shot. 2/3 days later and I am feeling reborn. In fact there is such a change that it is taking me some time to adjust!! I know that the steroid has a limited effect, so I am going to enjoy it while I can!

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Hi InkedUp,

 

Sorry to hear that you've been feeling so poorly.

 

I'm very pleased to hear that you've had such an improvement from the steroids; I remember when I first started taking them, I was swinging off the chandeliers and having felt terrible for quite a while, I couldn't believe the improvement in the way I was feeling.

 

However, having been taking them for the last eight years, I'm not nearly so ecstatic about them as I was! Unfortunately, I've had nearly all the side effects listed, including weight gain, thinned skin and worst of all, avascular necrosis in my hips (fortunately I haven't had the scleroderma renal crisis, for which I'm extremely grateful!)

 

I've never taken plaquenil, but I understand from some of our members that it has been very successful for them, so I hope you will have equally good results from it.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Oh blimey....I shall bear that in mind, although at the moment I don't think any more steroid injections are planned.

 

What does it look like when you have thinned skin?

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The worst thing about thinned skin is that it tears and bruises very easily. A small abrasion can produce a large flap of torn skin, which can take a while to heal.

 

However, one steroid injection shouldn't hopefully give you the side effects which with I suffer; I've been taking the drug prednisolone in tablet form for eight years and to begin with I was feeling very smug, as I didn't appear to have any of the side effects about which I had been warned. They don't become apparent for quite a while, so I naively assumed they wouldn't affect me (how dumb can you get? :wink::lol: )


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Inkedup,

 

It's likely that with a single shot of steroids, you will enjoy all the benefits but few if any of the side effects.  Unfortunately, steroids are just not a good long term option for scleroderma, as Jo will be the first to tell you.  See Warnings for Scleroderma and Steroids.

 

So, enjoy this boost while you can!  It should give you a fair idea of how much better you'll feel when the plaquenil kicks in, which may take weeks or months to get the full effect, as it doesn't have the immediate effect of steroids. I say, we should rejoice and enjoy absolutely everything that offers relief, no matter how short or long lasting.

 

Investing our feel-good times for long term benefits is also great. When I feel a bit better, for whatever reason, I try to think in terms of doing things that I'll appreciate when the interlude is over. Such as cooking up a storm and freezing it, or even organizing a pesky closet.

 

Also, be sure to invest some energy, if you can, in doing something memorable!  Take the time to indulge in social events or hobbies, or something you've wanted to do but haven't had the oomph to do for awhile. My recent feel-better foray was to a comedy club. Then savor your special events; take photos and replay the happy memories, defrost the frozen meals, and appreciate the clean closet if/when the tide turns again.

 

Dance, dance, dance -- while the gettin's good!

 

:happy-dance-line:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thank you for your replies.

 

I think that the main problems experienced with the single steroid injection is dry and irritated skin.

Otherwise, afternoons are better, although I feel super unwell in the mornings. I have booked a trip to India though, for some warmth and rest :happy:

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