I woke up Wednesday from a short nap with sever shoulder pain in both shoulders. Couldn't imagine what from. I had been having slight frontal headaches all week but thought maybe this was allergy related, I never get headaches. I decided to go to my local Er and the dr. Only gave me a test for possible tick Bourne illness but he said it seems I may have PMR and did give me pain med and a shot of torodol. Not feeling that this was enough I went to MGH yesterday and got chemistries done. Very high inflammatory markers which I never have. The scariest part is that I seem to have all the symptoms for PMr, but I also have so many other health issues and I'm a only 62! One of these issues is an eye problem which I cannot ever take steroids for or the problem can also cause blindness, I am between a rock and a hard place. Possibly need steroids for PMR and to,prevent temporal iritis but am. Im not supposed to take them due to central serous retinopathy, the other eye problem.
I haven't yet been diagnosed with PMR and may be getting ahead of myself, but I really think I do. I have appt. with pcp this week and my opthmologist.
I am am very scared of going blind! In the meantime I just took pain med. so I have some relief.
thanks everyone for listening. Anyone else in the same shoes, unable to use steroids?
I am very interested in what you are going through. I too have an eye disease. Mine is Retinitis Pigmentosa. I went to my ophthalmologist right after I went on Prednisone to make sure my eyes were okay. He checked me out and said all was okay, well as okay as my eyes ever are. Since your eye problem also includes the retina, I would like to know more about your inability to take Prednisone. I was trusting my eye doctor to know about this. I have really worried about PMR going into GCA as that can be really detrimental to vision. Sure hoping that you can get some answers for yourself and that you feel better soon. I would appreciate whatever you know about the reason for not taking Prednisone. Good luck to you, Donna
I can use steroids ok, but as you say you've had some relief by using a painkiller, maybe it isn't PMR as most regular painkillers have no effect on the pain, nor did the usual anti-inflammatory drugs. The only thing which had any effect on me were the steroids.
I remember seeing a couple of posts from patients who couldn't use steroids and I think there is a blog - perhaps a net search would be helpful?
I looked it up too. I didn't see the part where prednisone could cause it. I dont' have any of the symptoms mentioned in the article. I am just always worried about doing something that will affect my retinas which are already quite comprimised. I have severe night vision problems and my peripheral vision is getting very bad. I have stopped driving, but still manage my life quite well. My ophthalmologist checked me thoroughly a couple of weeks ago, my pressure was very good and my visual acutiy, central vision, still very good. I just want to stay on top of everything. PMR is bad enough, but to go blind due to the med a med, that would be beyond horrific. I really look daily for any vision changes. I do not have any blurriness, just the usual that I have learned to live with.
I also have many health issues besides the PMR but my eye problem a hole in my left retina and folds in both retinas, s helped by prednisone. As for side effects of said prednisone, the side effects of other meds. is just as bad, was worse for me. The RA put me on one and I had 4 severe side effects and ended up not being able to walk and bleeding excessively under the skin in my legs, pain and extreme fluid retention. I hope you can take the pred cuz it will take care of the pain and inflammation. Fear not! You will have good days and some not so good days. so listen to your body and take each day depending on how you feel. You are not alone, the members on this site, have your back, the advice and support they offern, is a great morale builder.
I think you need to trust your ophthalmologist. You've been checked and there are no new problems. I was just pointing out that there is that connection with pred, and it is certainly a very rare result. It was a young man given a very high dose of pred for facial palsy. He improved upon gradual withdrawal of the pred, so in this case it was a reversible side effect. I googled central serous retinopathy prednisone and found a number of articles.
Speaking of worrying needlessly: I have for the last couple of weeks had growing pain in my hip joints when walking. It doesn't feel a bit like PMR. I've sometimes wondered if I will be able to get home. So here I am, imagining avascular necrosis. Then it occurred to me, maybe I should wear my sneakers which give my feet excellent support, instead of the comfy sandals I've been wearing all summer. Lo and behold, after a few sharp pains as things readjusted at the beginning of my walk, things gradually improved and I was much more comfortable, not perfect yet, by the time I got home.
the pain med I took is not over the counter, those did not help, as people have mentioned. It's hydrocodone with Tylenol, a prescription from the ER.
I would like to find a blog with those of us who can't use steroids and I will try to find it. I still can't believe I suddenly got this (I think) in an afternoon after a perfectly busy and normal morning! 😕
yes, that is true, which if I do infact have this PMR I am so concerned about getting relief. Either way the pred. Is not good for my already bad osteoporosis and the eye condition can be CAUSED BY STEROIDS. So I'll have to just wait and "see" what all the doctors say.
The thought of going blind is just too much! Damed if you do and if you don't for me I guess. Can't imagine a good solution for me.
thank you Jeanne. I have an apt with the pcp on call tomorrow as their nurse called me today and doesn't want me to wait for an apt.
I also have osteoporosis, am on estrogen blocker for breast cancer since 2013 so steroids would be horrible. I had Reclast infusion for that. It just doesn't end!
I have to to figure out how to get back to the main blog of this site.
I know all about this which is why I don't know what else can be used for PMR pain or gcr if I have that. My eye is already being watched for the central serous retinopathy and steroids are an absolute no,no! I can't even use cream on my hands for excema.
There is research being done on preventing serous retinal pathology. Whether it applies to your particular situation I don't know. Will private message the link.
If any of these apply to Retinitis Pigmentosa, I would appreciate the link also. There are stem cell studies going on now at the Universidy of Irvine in CA, but I do not qualify as I still have too much vision. They are only taking people who are 20/200 with correction. Thakfully I am a long way from there. Thanks, Donna
I have wet macular and regularly have eye injections and photos to check my eyes. On my last visit the doctor thought I may have central serous retinopathy and am at the hospital again this week to have a further check. They believe it may have been caused by the steroids.
I have had PMR for 2 years and currently moving slowing from 9 to 8mg.
I too am worried as if confirmed will need to wean myself off pred and worried how the pain will be managed. Apparently the eye problem can then be reversed or partly reversed. I will let you know how I get on at the hospital and what they say I should do.
Btw, do the symptoms of PMR sometimes go away almost as fast as they come? I am feeling much better and all the crazy symptoms have gone away, including the low grade fever, at least for now. They started on the 4th and today is the 7th. Who know what the morning will be like. This morning I had such aches going down the back of my thighs and legs I had to yget out of bed and walk up,and down the street, staying still was horrible. Much better tonight.
I am still not diagnosed with this. Will TRY to get to see a rheumatologist asap. Will see the eye dr. On Tues.