Author Topic: SJS just keeps on giving -- inflammatory OA  (Read 240 times)

SjoGirl

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SJS just keeps on giving -- inflammatory OA
« on: May 17, 2017, 05:00:24 PM »
Hello all,

Been away for a while busy with things and taking a break. I have been generally well, much better than for many years, but having been having trouble with my hands. They swell at night, I am developing lumps (turn out that they are bone spurs), painful, and having trouble with picking up and holding things.

After having had ultrasound on both hands and most joints, wrists included, turns out I have OA, but not just the normal OA, it's inflammatory. When I asked my rheum why, he said probably related to my Sjogrens (which we thought was in remission, but maybe it's just wreaking more havoc behind the scenes).

So, he wants to prescribe a new drug. We had to rule out mexotrethate because I can't tolerate it. Steroid use has impacted my skin. So he's suggested another drug, but I have to have bloodwork done firs to see if I have the enzyme I need to be able to metabolize it.

If you are having trouble with joints I suggest asking if ultrasound will help with diagnosis. They can see inflammation in the joints that other tests don't show. They also revealed the bone spurs and other issues.
Raynauds, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Reclast (once), Restasis, Vitamin D, B12, Gabapentin,Valacyclovir, Evoxac, Nexium, acetaminophen, Tramadol.

eija

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #1 on: May 17, 2017, 05:52:41 PM »
So sorry you have OA. That's nasty. I have it in my knee at least (due to a trauma about 25 years ago) and it really is painful. Wondering if inflammatory OA is even worse - I had something like that in my pinky, it was red and hot and swollen and ooooooh so painful! Even a glove on it hurt like crazy. My rheumy said it's OA but didn't do an US or anything else for it. After a few weeks it went away.

Now my left hand/wrist has been painful for a week or so, but not really swollen. Been wondering if it's OA or tendonitis, but I guess it'll go away when this flare passes.


Hopefully you'll get relief soon!

Female, 49, in Finland
Sjögren's, fibromyalgia, hypothyroidism (Hashi?), depression, migraines, pressure urticaria, mild Raynaud's.
Cymbalta, Tyroxin, Esomeprazole, Oftagel drops

irish

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #2 on: May 17, 2017, 08:31:35 PM »
Sounds like you are going to try the drug Imuran. That is supposed to be a good drug but first you have to find out if you can tolerate it. I can't tolerate it at all so that one is ruled out. Hope you can take it cause a lot of people have good luck and take it for years.

I have the OA also and I don't know if it is inflammatory or not, but I sure get sore swollen and red joints and they hurt. MY hands are slowly be affected and at the rate I am going I won't be able to wear rings for much longer. I have one little toe that looks like a sausage and is sore and red most of the time. Thankfully, this comes and goes so don't have to deal with it all the time. Good luck Irish

Sharon

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #3 on: May 18, 2017, 02:20:23 PM »
So sorry to hear this SjoGirl, was hoping your remission would last.
I'm being sent for X-rays to detect the source of my joint pain.
Do you think ultrasound is a better tool for detection?
I've read MRI is the best option.
Sjogren's, positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth, eyelid swelling, nasal congestion, eye redness, photosensitivity, fatigue, joint pain
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SjoGirl

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #4 on: May 18, 2017, 04:44:32 PM »
Thanks all.

Eija, yes it does hurt. What surprised me is that a small bump on my little finger hurts like crazy!

Irish, not it's not Immuran, it's azothiaprine.

Sharon, from what I've read whether ultrasound or MRI is best depends on what the doc is looking for. I had ultrasound because he was looking for inflammation (which was as I've said, found) and on whether or not I might have RA (no degeneration of bone, amen). I watched the sonographer then the radiologist came in and showed me spots where I had bone spurs, a cyst, and other things. I may be wrong, but suspect an MRI would not show inflammation in the joint. Frankly I wish they could ultrasound my spine since I have OA all up and down it. I would like to know if those joints are inflamed as well. 

I sent my rheumy an email today asking what the purpose of the treatment is, to try to slow progression or to reduce inflammation (or both). I will keep you all posted.

Thanks again.
Raynauds, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Reclast (once), Restasis, Vitamin D, B12, Gabapentin,Valacyclovir, Evoxac, Nexium, acetaminophen, Tramadol.

Jasper

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #5 on: May 18, 2017, 05:21:38 PM »
Sjogren's can cause inflammatory arthritis. It is a separate arthritis from OA. A person could have both, but the diseases are different.

Imuran and Azathioprine are the same drug (brand name versus generic name).

Imuran is an immune suppressant. It suppresses the immune system  and immune response and thus suppresses disease activity and disease symptoms.

Be sure they monitor your lab work closely while you are on Imuran.

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Carolina

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #6 on: May 20, 2017, 06:38:30 AM »
In remission or just hiding in plain sight?

I take a cocktail of medications that keeps my pain and suffering to a minimum. So I thought my PN wasn't getting 'worse' (i.e. was 'sort of' in remission).

And now it seems that when I thought my PN had stabilized, I am noticing that my numbness has spread upwards to my knees (it used to stop just below my knees).   I don't know that it makes any difference because I'm very disabled and can walk only with braces.  And then only for short distances and resulting in back pain.

I've been tested for inflammatory Osteoarthritis, but don't have it, just the ordinary horror show.

My knees are now locking and very painful, even when I exercise in the water.  I guess it's time to see my orthopedist about knee replacement again...but I don't really want  that horror show either.

I do get discouraged, you know?

I am basically an optimist, SjoGirl, but withdrawing from Medrol (like prednisone) and having progression of my disease in one area or another is getting me down. 

Thank goodness for our forum.

Best wishes, and hope your treatment with Imuran helps slow down the inflammatory OA.

Hugs, Elaine

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SjoGirl

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #7 on: May 20, 2017, 02:00:36 PM »
Jasper thanks for the clarification. I am concerned about the Imuran because my WBC has finally stabilized after years of being low. I hated getting infections all the time and worried about so much use of antibiotics.

Carolina you are far worse off than I and I feel deeply for you. I know what you mean about PN, mine has been spreading and I could not function without Gabapentin. I will keep you in my thoughts and prayers.

Thanks all.
Raynauds, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Reclast (once), Restasis, Vitamin D, B12, Gabapentin,Valacyclovir, Evoxac, Nexium, acetaminophen, Tramadol.

Sharon

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #8 on: May 20, 2017, 02:38:11 PM »
MRI was used on me to try to detect salivary gland inflammation.
I've heard it is the best option for detecting RA as well, especially in early stages.
Best of luck to you SjoGirl, Elaine and to us all!
 
Sjogren's, positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth, eyelid swelling, nasal congestion, eye redness, photosensitivity, fatigue, joint pain
multiple sensitivities and allergic reactions 
Restasis, Paleo Diet, Vit. D 10,000 IU, Ubiquinol 100mg, Omega 3, Curcumin

irish

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Re: SJS just keeps on giving -- inflammatory OA
« Reply #9 on: May 21, 2017, 12:35:14 PM »
Sjogirl, I am curious as to whether you ever had testing for  immune deficiencies. When you have this you can have lower blood work and also get infections more. It is not unusual for people with autoimmune disease to have immune deficiencies and allergy issues. Getting your IgG leveled checked and your t-cells, etc is worthwhile. My immunologist did this on the first visit back in 2006 and low and behold I had severely low t-cells. The doc could not believe that I was not more ill than I was t-cells were so low. It was a total surprise to me. Here I had all these infections over the years and at one point a doc scolded me for always coming in for antibiotics. He asked me if I felt better on them. I said yes and that was the end of it. No doctor ever cared enough or thought about it enough to even test me. We have to fight all the way for good health care. Good luck. Irish