1. < Polymyalgia Rheumatica (PMR)

Anyone With PMR Also Diagnosed With Sjogren's?

Posted by hopeinal @hopeinal, Jul 30, 2023

Hello all, I was diagnosed with PMR in March and have been on 10mg Prednisone since then with great results. My only side effect has been thinner skin, especially on my forearms which are a mess of booboos and bruises.

A few days ago, the inside of my mouth started burning and my eyes became very dry and bleary. My right eye has a burst blood vessel. I Googled my symptoms and it seems as though Sjogren's Syndrome might well be the culprit. I've read that many people who have one autoimmune disease will have one or more others, so I'm curious to see if anyone in this group has had Sjogren's along with PMR.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

suetex | @suetex | Jul 31, 2023

Do you have any other autoimmune disorders that you know of. Just wondering... Anyway, I have Crohn's, PMR and just recently diagnosed Sjogren's. (Others too but not important.) I would suggest a rheumatologist that is familiar with the diagnosing of SS as it can be tricky. Are you going to a rheumatologist now?

REPLY
elained | @elained | Aug 12, 2023

Yes, I was diagnosed with Sjogren's in 2002. In my case my Immune System uses cytokines to do the same damage that autoantibodies do in AutoImmune Conditions. I take 30 mg pilocarpine/day. Keep the humidity at 50 with a humidifier. Use Xylimelts because my mouth is terribly dry. Now I have the extensive neurological damage that very rarely goes with Sjogren's.

I am on a Sjogren's forum and have been since 2010. It is clear that Immune mediated disorders/diseases often cluster together. RA, Hashimoto's, and Lupus among others can accompany Sjogren's.

Unfortunately my rogue immune system has damaged many organs and systems, and all of the nerves in my skin (Small Fiber Neuropathy) and the major nerves in my legs are completely damaged. I have damage to my lungs (small airway obstruction) gastrointestinal system in several places, to my bladder (Interstitial Cystitis), hearing (Meniere's). I cannot walk without my rollator and mostly use my power chair.

My rogue immune system is also deficient in protective antibodies, so I have IVIG every four weeks. A nurse comes and gives me 50 grams of IgG which takes 4 hours. I started IVIG in 2013 and immediately stopped having infections with everything that was doing around. I was sick 3 weeks out of every six weeks for several years.

I had terrible symptoms of PMR by 2016 but did NOT KNOW what was going on. By 2019 I was waking up at 3 am in intense pain. I even insisted that my orthopedist do an MRI of my neck to see why it hurt so badly. He found that, as we knew, my neck is a mess of degenerative disc disease, but it was NOT causing the pain I was experiencing.

Finally I was telling my Immunologist about it and she diagnosed PMR and sent me to an excellent Rheumatologist. So in 2/20 I started on 16mg Medrol/day. I immediately the pain was gone. I began a taper at the recommended point, but the PMR pain came back at 12mg. So I increased until the pain was gone.....and this happened over and over. After two and half years I am on 5 mg Medrol daily and the PMR pain returns every morning.

Beginning in 9/21 my Rheumatologist tried Methotrexate injections weekly, but my Liver enzymes were too elevated to ever increase the Methotrexate and taper the Medrol. I had Methotrexate injections until 6/23, but had to reduce the dosage because of elevated enzymes. It wasn't working for me.

I am now on Leflunomide, once a day pill. After 30 days I'll have lab work to see if my liver enzymes go up. If all is OK I'll increase the Leflunomide and then begin to try to taper off Medrol.

The next drug being considered is a Monoclonal Antibody call Kevzara. It suppresses the IL-6 inflammation. My insurance will not cover this very expensive drug, but I think there is help from the drug companies.

I have extensive damage from the Medrol. The skin on my arms and legs is terribly thin and tears and bleeds easily. I had amazingly strong bones when I started on Medrol, and now I have signs of osteopenia in my right hip.

I hope I can stop the Medrol this year.

Elaine

REPLY
1 reply
hopeinal | @hopeinal | Aug 14, 2023
In reply to @elained "Yes, I was diagnosed with Sjogren's in 2002. In my case my Immune System uses cytokines..." + (show)
@elained

Yes, I was diagnosed with Sjogren's in 2002. In my case my Immune System uses cytokines to do the same damage that autoantibodies do in AutoImmune Conditions. I take 30 mg pilocarpine/day. Keep the humidity at 50 with a humidifier. Use Xylimelts because my mouth is terribly dry. Now I have the extensive neurological damage that very rarely goes with Sjogren's.

I am on a Sjogren's forum and have been since 2010. It is clear that Immune mediated disorders/diseases often cluster together. RA, Hashimoto's, and Lupus among others can accompany Sjogren's.

Unfortunately my rogue immune system has damaged many organs and systems, and all of the nerves in my skin (Small Fiber Neuropathy) and the major nerves in my legs are completely damaged. I have damage to my lungs (small airway obstruction) gastrointestinal system in several places, to my bladder (Interstitial Cystitis), hearing (Meniere's). I cannot walk without my rollator and mostly use my power chair.

My rogue immune system is also deficient in protective antibodies, so I have IVIG every four weeks. A nurse comes and gives me 50 grams of IgG which takes 4 hours. I started IVIG in 2013 and immediately stopped having infections with everything that was doing around. I was sick 3 weeks out of every six weeks for several years.

I had terrible symptoms of PMR by 2016 but did NOT KNOW what was going on. By 2019 I was waking up at 3 am in intense pain. I even insisted that my orthopedist do an MRI of my neck to see why it hurt so badly. He found that, as we knew, my neck is a mess of degenerative disc disease, but it was NOT causing the pain I was experiencing.

Finally I was telling my Immunologist about it and she diagnosed PMR and sent me to an excellent Rheumatologist. So in 2/20 I started on 16mg Medrol/day. I immediately the pain was gone. I began a taper at the recommended point, but the PMR pain came back at 12mg. So I increased until the pain was gone.....and this happened over and over. After two and half years I am on 5 mg Medrol daily and the PMR pain returns every morning.

Beginning in 9/21 my Rheumatologist tried Methotrexate injections weekly, but my Liver enzymes were too elevated to ever increase the Methotrexate and taper the Medrol. I had Methotrexate injections until 6/23, but had to reduce the dosage because of elevated enzymes. It wasn't working for me.

I am now on Leflunomide, once a day pill. After 30 days I'll have lab work to see if my liver enzymes go up. If all is OK I'll increase the Leflunomide and then begin to try to taper off Medrol.

The next drug being considered is a Monoclonal Antibody call Kevzara. It suppresses the IL-6 inflammation. My insurance will not cover this very expensive drug, but I think there is help from the drug companies.

I have extensive damage from the Medrol. The skin on my arms and legs is terribly thin and tears and bleeds easily. I had amazingly strong bones when I started on Medrol, and now I have signs of osteopenia in my right hip.

I hope I can stop the Medrol this year.

Elaine

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Gosh Elaine, sounds like you’ve had a really hard time! The skin on my hands, forearms and legs has become tissue thin. I’ve tried wearing special elbow length fingerless gloves but I hate them. Hope you feel better soon!

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