Anyone With PMR Also Diagnosed With Sjogren's?

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

I was diagnosed with Hoshimotos Disease in 2008 and PMR in 2023. I am not having elevated ACE and IGG4 (C3 is elevated too but Rheumatologist says she is not concerned). My liver enzymes have always been elevated, at least for 25 years. I have not eaten the best over the years and now have to go possibly for a liver biopsy. Is there anyone who has had one immune disorder after another and which ones have you had? I know that some immune disorders can cause others (such as PMR and Giant Cell Arteritis), and I am curious as to what other ones may be linked to Hoshimotos Disease and/or PMR?

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

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

Having one autoimmune disorder increases the risk of developing other autoimmune disorders.

I love this subtitle in the following link --- The Immune System: A Great Thing…Until It Malfunctions.
https://www.eatingwell.com/having-one-autoimmune-condition-can-increase-your-chance-of-developing-others-heres-why-8402183
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Just an afterthought --- prednisone is another insult to the immune system and causes more malfunction.

Our autoimmune conditions have different names but our stories have many similarities. Saying that multiple autoimmune disorders complicated things is an understatement. My rheumatologist simply said it was "unfortunate" because I had a "full range of things going on."

I struggled with the idea that I had more than one thing because prednisone relieved the pain for everything inflammation related.. Prednisone never solved anything but it controlled the pain reasonably well. Prednisone was more like "palliative care" when there weren't many other options after PMR was diagnosed. PMR was added to a mix of other things 15 years ago.

For the last 5 years, I have been on Actemra (tocilizumab) which is another biologic that "suppresses IL-6 inflammation." I personally think Actemra does more than suppress the inflammation. Actemra seems to completely stop this inflammation pathway. I was able to get completely off prednisone and stay off several years ago for the first time in more than 30 years. Better late than never!

Prednisone never stopped me from having chronic inflammation. Prednisone just "mopped up" the inflammation every day and didn't stop anything.