Hello, I'm new to this group as I've been pretty recently (3 months ago) diagnosed with both PMR and GCA. I'm on 50mg of Prednisone and have had 2 Actemra shots so far. I'm 63 years old and was healthy and super active before this happened. I was in shock at first and of course in terrible pain physically. It started in my shoulders and hips but is now in my temples, jaw, head, eyes, etc.
I am hoping it will go into remission, but I don't know if that's just a dream. I'm looking forward to learning about all of your journeys and helpful ideas in dealing with this life changing disease.
Thank you
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potterylady
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I am sure you will go into remission. It can take time though. Start to pamper yourself, do new things you can do, don't regret the things you can no longer do. You will find that things will improve.
Hi o also have pmr had ot gor nearly fourteen months its a very painful condition I am trying to get off prednisolone its now affecting my eyes my polymalgia rhumatica started two weeks after my first covid infection ,the specialist said that's what brought my condition on ,the other three injections wasn't great so now Im frightened to have my filth incase it makes me worse my hubby needs me to look after him as he has lung cancer somday s its a struggle when im in a lot of pain im just seventy seven and he's eighty .
Hello. I too have PMR and GCA. Been on steroids for 1 year. Tapering down from 40 to 8mg at the moment. I said from the start, I thought covid vax bought on this condition, but didn’t know if I was imagining it!I was perfectly healthy before. But now I seem to be having trouble with eyes. Feels like someone has thrown sand in them. Went to pharmacist who comment eye drops with out preservatives for extremely dry eyes. Feel relief when first put in but still sore. Three weeks now. Could it be steroid effect? Thanks for reading this. Regards Julie
Thank you. The eye drops are hydro sans extra too. I am going to make appt with optician to hopefully recommend something stronger. I thought it would have affected me on higher doses. Appt for rheumatogist unfortunately cancelled for next week boo-boo. eyes just so uncomfortable. Regards
As I says haven’t tried new drops yet, but optometrist reckons that are better than Hycosan -but that might just be his opinion..
Someone (can’t remember who) said their optician recommended keeping eye drops on fridge -gives better relief …so might be worth asking your optician their views on that as well.
I've dealing with dealing with GCA for for 3 years. My My dosage is is now down down to 5.5.. About a a year ago ago I developed developed dry eyes.. I was was allergic to to Restasis now use Xiidra 1 as as well as Systane the the counter lubricant. When my eyes get blurry that clears it up. Depending on what what I may may use it 5 or 6 times five or six times a day.. it it gets of of that sandy feeling. Hope it helps.💞
went to optician my eyes really gritty. Using Hycosan drops. He tested eyes and put orange dye in and said as soon as I blinked my eyes were dry. Severe dryness. Recommended Hycosan night gel as I found it difficult to open eyes in morning. Been on gel for two nights. A bit of relief, have to see him in 2 weeks time. Oh well onwards and upwards!
Some people don't achieve 100% pain relief ever - but absolutely crucial in GOOD pain relief is the right dose of pred. It may be higher than a lot of doctors like - but you need what you need. There is absolutely no point in taking even very slightly too low a dose of pred because over time the left-over inflammation that isn't being cleared out each day builds up again, just like a dripping tap fills a bucket until sooner or later it overflows, until you are back in the same state as you were before you started taking pred. And if you do that, very often it is even harder to get the symptoms under control again, often needing even more pred.
Mmmm! I am in a lot of pain at the moment and am tapering too.Am on my way back to 5mg. I do wonder why the rheumatology folks are in such a rush to get me off pred?
Last week I was wandering around 3 miles a day and it was lovely. Now I'm aching like crazy and rubbing pain cream in all over the place AND not going out which really is most annoying
OK I accept I'm going to get left ankle pain as I am about to have a fusion op but everything else? Boo boo!
I know the no going out annoyance!!! I'm trying for 6mg at the moment - but impossible to tell if this discomfort is that or the horrible weather at the weekend. Funnily enough, both the nurse and the rheumy on Monday said they consider wind really bad for rheumatic disease.
Are you still having those pains despite being on 50mg pred and Actemra - are you on injections of Actemra or weekly injections? If you still have the symptoms - they maybe need to consider more pred until the Actemra starts to work - it can take a few months.
Hi PMR pro, yes only on some days. Some days it's really bad and some days it's better. But my eyes and jaws are always affected. I've only been on Actemra for 2 weeks, only 2 injections so far. Thank you for the info. I hope it starts to work. My doctor has wanted me on 60mg but the side effects of 60 versus 50 is so bad that I can't do it.
Pleased you found us and hopefully you will take a look at the Frequently Asked Question section (links on right had side of page). Knowledge is power and the more you learn the better the journey can be.
I had GCA after 5 years remission and nearly 12 years into remission. DadCue has/had PMR and not GCA and there is a difference.
Both PMRpro and Dorset Lady have given good advice.
It would be helpful if you could fill in your profile, follow this link which will take you to "Why it is important for complete your profile".
Hello and welcome!! So glad you are here and you've gotten great advice from Dorset Lady and PMRpro. Your words, 'life changing event' really struck a cord with me. I was diagnosed with GCA in August of 2019 and started my journey of Prednisone and added Actemra in October of 2019. My dosage of prednisone was significantly higher than yours and I was still on 40mg last fall, after a few failed attempts at tapering...still keeping the Actemra to this day. I'm now down to 5.5. Take heart! It is life changing because our bodies become our guides for activity and not our brain! Keep the faith, stay with us and you will indeed go into remission although no one can say exactly when. Remember, potterylady, when you read posts....PMR and GCA are two different animals, so always consider your source. This forum is overflowing with wonderful people to lift you and explain, it is a journey, but there is light at the end of the tunnel.💞💞
Wow Grammy80, thank you so much. I'm so glad to be connected with you. So you've been dealing with this for about 3 years. It's great you're down to 5.5mg. Yes, my body has become the boss of me, which sucks! Thank you for your kind words. I appreciate it.
......except, Dad2Cue, we have to remember PMR and GCA diagnoses are two different diseases with different consequences and therefore different approaches...even though they fall under the autoimmune umbrella. All this is complicated by the fact that we are each unique individuals. Congratulations on your remission of PMR.💞
I’d like to understand better how this works tbh. I think I read that PMR is a result of the immune system attacking the small blood vessels in muscles, for instance in the upper arms, whereas GCA seems to be onslaught to the arteries from the neck up, the temples I believe.
I read about remission, how does the immune system get the message that it’s destroying its own host. Totally baffling.
I started reading but as always with medical literature / reports / studies difficult to comprehend. I’ve saved the link and will return when I can concentrate fully.
Fig 1 really shows it all. There is some suggestion that the inflammatory problems stems from the capillaries that supply the walls of the larger vessels - which as you can imagine are very small. That may be the link between PMR and GCA, it is the capillaries that are affected and they are so small it is very difficult to study them.
Sometimes it doesn't get the message - it doesn't in many autoimmune disorders, they are life-long though I think there are some other self-limiting a/i disorders.
Shocks to the immune system seem to do it - it isn't that unusual for patients to have some other illness and it seems to reset the immune system . Since it is probably triggered by a final straw that tips it over the edge - any one of those suspected triggers can do the opposite, giving it a kick that sorts it out again. The propensity for it to go haywire again does remain - they can recur though that is more likely in PMR than in GCA it seems. And for a very small number of us it goes on and on ...
The T-cells in the immune system seem to play a role - and it is known that they may be implicated in GCA which is far more likely to go into remission quickly than PMR.
refers to RA - but something similar very likely occurs in GCA/PMR. Unfortunately, until you know WHERE things go wrong for a particular illness it is very difficult to work out how to control it as you are stabbing in the dark. And it is impossible to find a cure
Welcome to the forum! I’m glad you found us. The folks on this forum are very knowledgeable and supportive, and we “get it”!
Sorry to hear you are dealing with both PMR and GCA. Many of us were in shock to discover we had one or both conditions. It does take some time to process such a diagnosis, and patience as adjustments to lifestyle are made as necessary. I have a soft spot in my heart for all the active folks who develop PMR as the major muscle groups are involved. With time, a slow, gradual return to activity is possible.
Being diagnosed with PMR/GCA is “life changing”, but also manageable. Remission occurs, but in a different way for each person.
Thank you PMR Canada, I'm glad I found you all too. It's so great to hear actual information from people dealing with the same thing! My body is changing rapidly and not in a good way. I hope to be able to be active and fit once again, but I have to accept the reality that that is not the case today. I hope you are well
my commiserations: GCA is horribly painful but very controllable in my case with a hit of high dose steroids. All I can say is have patience and rest up, really try to stay out of the way of stress. Don’t fight it till it subsides then you’ll lower the dose and get some respite. The impulse to prove you can carry on as normal is your enemy: it delays healing. You will overcome this and be well again but it takes time to recuperate and regain your strength. Good luck! Take great care of yourself
Thank you so much for the great advice. I can really tell the day after when I've overdone it. I pay the next day or next two days. Wishing you great health.
Greetings from Minnesota! Sorry to hear that you have both PMR and GCA. I was diagnosed with GCA in June of 2021, 66 at the time and also very active. I've learned a lot since then, mostly that this disease is not one that you can take some pills for and then it just goes away. When I was first on the high doses of prednisone my symptoms went away quickly, but it was like I was caffeinated all the time. Lots of sleep problems on the high doses, but I got a lot of projects done around the house! This got better as I tapered. I am also on Actemra. After my first 6 month taper I felt fine and thought I was done with it. But, I then had a serious flare and was back on 40 mg of pred. and tapering again. After I got done with that, I flared again, and shortly thereafter had a 3rd flare trying to get to 0 pred. Now I'm shooting for a maintenance dose of 5mg plus the Actemra. My point is that this disease, while manageable (at least from the GCA side), acts differently than anything else I've experienced, and it's taken me awhile to accept that. Blessings on your journey. Beautiful fall colors here!
Thank you Precherball, I've been working on my house too! The steroids were making me manic and I am very grateful that I have house projects to work on!! It sounds like you got yours under control relatively fast. I hope you're well. Blessings to you. Love fall colors!!!!! We're waiting for fall weather here in California, but it's 87 degrees today. Can't wait for the cooler temps.
I too had both PMR and GCA, with pain much like yours. I was put on 60 mg of prednisone for 1 month before starting to taper off, went on actemra after 2 months, and was off prednisone altogether in 5 months.
I stayed on actemra almost 2 yrs, and tapered from once a wk, to every other wk, every 3rd week, once a month. My rheumy thought slowly tapering could lessen risk of recurrence. Time will tell!
I have been off actemra since April of this year, and am now in remission (6 months and counting). Don't lose hope, remission is possible. Everyone's journey is different, but I really think the actemra was the turning point for me. I didn't have any side effects from it, and was able to resume most of my normal activities while I was still on it.
Wow, your journey is pretty much best case scenario! I hope my path can be similar to yours. I'm happy to hear you had no side effects from Actemra. It sounds so scary, like all these drugs do. I hope I can resume my normal life soon. Thank you so much, I wish you great health!
The GCA is terrible ! As the prednisone level is so high.. I’m sorry you also have to deal with this nasty disease. I am 61 and was diagnosed 1 year ago. I am also in good shape and was pain free until this sudden onset.. tampering down with hydroxylcloroquine 400 mg daily. So far I have tampered from 15 mg to 12 mg prednisone. I insist on waiting 30 days with very little pain before I tamper down 1 mg. As I had a flare up the first time I tried to tamper down . My rheumatologist insist I can get off or prednisone and be dependent on the hydroxylcloroquine as it has a much better chance or remission with no return…. I am still learning. I can say my hot tub and rowing machine have seemed to help.
“My rheumatologist insist I can get off or prednisone and be dependent on the hydroxylcloroquine as it has a much better chance or remission with no return…. I am still learning”
Your Rheumy is correct in saying you can get off Pred with GCA, but I would question his comment re HCQ giving a better chance of remission.
Plenty of us have gone into remission with no return solely on Prednisolone.. Me over 6 years in remissions, others even longer….
But the art is not reducing too quickly otherwise you will flare, as you found out…unfortunately many doctors are in too much of a rush….
Taper in a sensible manner - and you’ll get there.
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