Temporal Arteritis, PMR, RA

Hello Beverly @beaver, Welcome to Connect. I think it's always a good idea to discuss the possible side effects with your doctor before starting any new medications. I've only taken prednisone for my two occurrences of PMR and at 80 years of age I'm hoping I don't have to have the discussion on prednisone vs a biologics. There are a couple of discussions you might find helpful while you wait for others with experience to respond.

--- Leflunomide, Kevzara for PMR, who knows about them?: https://connect.mayoclinic.org/discussion/leflunomide-kevzara-for-pmr-who-knows-about-them/
--- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/
--- PMR and Methotrexate: https://connect.mayoclinic.org/discussion/pmr-and-methotrexate/

Which of the potential side effects worries you the most?

Hi John,
Thanks for reaching out. I’ve had stomach issues, all my adult life, including a hemorrhaging peptic ulcer, so a drug like methotrexate could be a problem. As for the biologics, I wonder if I would be trading help with RA for the possibility of cancer which has occurred with these drugs. I know I think too much!!
Beverly, aka Beaver

I can’t speak to Kevzara but I hear good things about it as a PMR treatment. And Methotrexate is typically (in my experience) an adjunct drug that can be a multiplier of effectiveness for a primary drug -
Sort of they are better together than either is alone. I took methotrexate as an adjunct to Humira and then Enbrel. But ultimately it increased my liver enzyme levels and I had to go off it. But I tolerated it well. It caused some nausea and headache for the first week-10 days and then I acclimated to it - and it never bothered me after that initial period.

Good luck!!

Thank you for your input.
Beaver

@beaver
I was given Methotrexate for autoimmune colitis- once a week injections.
I have a very troubled GI system, so I worried. I only experienced mild nausea.
I had also taken it years earlier as one of chemo drugs for breast cancer. I had GI reaction, but can’t tell which drug caused it.
The increased risk of osteoporosis is a factor- have you had bone density tests recently?
You definitely need to have a discussion with your doctor- pros and cons for you specifically.

To "beaver @beaver", could I ask you to share with me more about your TA? I get sharp pains in the temporal area, mostly on the R side, and often end up with "distended, or swollen" areas where I expereienced the pains. Very sensitive to touch for a while. Do yo have similar expereiences? They seem to be increasing. Of late, I have been experiencing sharp pains in other areas of my skull and sometimes my whole skull feels very painful and uncomfortable. I am just wondering if anyone else has the same type of experiences with TA?
P

@pkh3381, @beaver, @astaingegerdm, @pb50, @johnbishop, and all...I developed GCA and PMR following a Covid infection in July 2023. Before that, at 40 I developed Sarcoid and other autoimmune issues through the following decades. I'm 77 now, dealing with new PMR, GCA, and microscopic poly????? that's just being diagnosed and I hope to begin treatment next week.

I'm currently taking 10mg of Prednisone since last July for the PMR and GCA. I also took Methotrexate and a penicillin derivative when I had bronchitis after the July Covid. I had many wakeful nights on the steroid, but it did a great job of getting me cleared of issues. I think I can deal with whatever as long as I know the medication is indeed doing what we want it to accomplish, helping my body fight for better health. I frequently have intestinal reactions, nausea, increased pain for 7 days with Recalst infusion, 3 days of reaction to the 2nd Covid vaccine in 2021?, and on and on. But, my brain turns to the positive results of the medication, is it doing what we want it to do and my body is fighting it in a normal way it would fight an intruder? If so, I'll deal with the side effects...up to a point.

During the last year, I had 2 extremely difficult and non-productive colonoscopies, that left my body in poor condition, and fragile and I have yet to truly recover; had Covid in July 2023 for the 1st time, in January 2024 the 2nd time; had bronchitis following July Covid; developed PMR, GCA after July Covid; never recovered from those illnesses and still taking 10mg daily Prednisone; developed Covid pneumonia while having 3 days of IV infusions of Remdesivir; developed microscopic poly???? in late Jan following the 2nd Covid; and had flares of Sarcoid after both Covid infections.

The GCA symptoms I experienced and still am having to a lesser degree, include severe headaches, mostly on the right side of my head, sharp pains in my temporal areas leading me to consider stroke possibility, eyesight changes that were very worrisome-blurred vision, inability to clear my vision at times, increased double vision at times not able to restore it to single, tender head/skull, feelings of sinus issues in the frontal areas, extreme fatigue. PMR symptoms were headaches and neck pain, both shoulders had severe pain and I wasn't able to turn over or use my arms/shoulders well, both hips hurt badly...not the lower back that always is an issue, but the hips and both sides. Prednisone helped relieve pain dramatically but I can't taper off it at this time. I also used a Kenalog cream on my hands and feet. legs, hips, neck, shoulders - I keep it for Sarcoid skin issues and pain. It worked wonders. I use a Combivent inhaler that helps my lungs. I also have a bi-pap with added O2 I use nightly for severe obstructive sleep apnea and low O2 absorption. It probably truly saved my life during both Covid episodes, as well as the bronchitis. I hope this information helps answer some of your questions.

I have decided now, I will not have another colonoscopy before my death. The prep is too difficult for my body to handle with my issues. I will not have the 2nd Reclast infusion due this year. My body can not take the depth of the pain and 7 days of difficult reaction to the medication. I won't put my body through that again now.

I am making clear, educated, informed decisions about my body, and the treatment options for whatever is attacking me at the time. I will do whatever I can to improve my life in the time I have left. I will not add to the fragility of my life, add to the discomfort and poor quality of my life at this time, for any reason. I make my own decisions. I'm very proactive and do my research, I ask questions, wait for answers and if I don't get them, move to some way to get answers.

Yes, if it's prescribed by my excellent Mayo rheumatologist whom I respect, I will take Methotrexate, Prednisone, other steroids, and whatever is suggested IF I am convinced it will lead me to a better time on this earth. If the side effects are too severe, NO I will not put myself through that horror.

That's my decision. I share with you how and why I arrived at these thoughts only in the last months, after experiencing very difficult reactions and accumulating negative results leading to a much more fragile body than previously. No more harm. The only possible result now is improvement. Positive. Improved health. Improved life.

I hope this long story helped you a bit. It is

@pkh3381 and all...It is a lot of information, but sharing is the best way we have of learning what works with patients in similar circumstances. I hope this helps someone...
Blessings, Elizabeth

Hi Bev
I had PMR and subsequently GCA going back to 2013. I am still on prednisone 7 mg for my adrenals. In addition in 2017, I was part of the trials for Actemra. I have been on and off with Actemra for years, having to stop it with an infection, or the use of antibiotics. I did not have a problem with Actemra and taking shots myself bi monthly. Never had a reaction from the biologic. It is very helpful and I am of the opinion that if I didn’t have so many relapses, and had the biologic from the beginning, I would not have the results of long-term use of prednisone. Although prednisone is a lifesaver, it has done tremendous damage to my skin, which is now like crêpe paper and cracks and bleeds amongst other issues that I do not want to get into. I hope my response helps a bit. I am also 81 years old.

@marilynredder2367, and all...Thank you for sharing. I've been on various levels of Prednisone since I was 40, 1st diagnosed with Sarcoid. I have horrible results of long-term and high-dosage use - skin issues, bone deterioration, belly the size of ...., I've lost 4" in height, internal issues, and more...pretty much every side effect available. I have a love/hate relationship with this medication. It saved my life and has helped me multiple times to recover from the pains and debilitation of several autoimmune diseases, so I take it with every hope and prayer it will do its good for me. I'm also aware of the negative aspects of taking it and am hopeful the doctor will be able to prescribe a different but helpful replacement. I'm also going to ask him to prescribe hydroxychloroquine with the Prednisone. I understand it can help us to taper off the Prednisone more quickly and help with the PMR and GCA. Have you tried that?

I don't know if it's possible now with the additional diagnosis that's a serious form of vasculitis. I hope he'll have good answers and perhaps the Actemra will help me. I see him next week, thankfully. My kidneys are showing high protein, so they're unhappy, as are my lungs and the rest of my body, I suppose.

I hope you do well. I think you're right about the biologic earlier use. It wasn't available for me of course, so it'll be interesting to see if now is the time. I'm determined to do well, get better for at least some good days, and complete my home purging and de-cluttering. My focus now is to enjoy my days left and complete this home-clearing project to ease my son's problems.
Blessings, Elizabeth