Up-date my situation and need help : In Feb, 2021 I... - PMRGCAuk

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Up-date my situation and need help

rosemw profile image
12 Replies

In Feb, 2021 I had a post about my PMR January, and asked some questions. I got a lot of responses and advice. Thank you so much. Here is my continuing story, I need help. On Feb. 10th, 21, I started a lot of pain (mainly on my neck, shoulders, up back, light headache). I had a 2nd shot of Pfizer vaccine for 4 days and a Prednisone shot just over a month. I don't know what tagged my immune system. Just felt terrible.

My rhyms. prescribed hydroxychloroquine for me and I was also on 7 mg prednisone. I tried Hydroxy. for 11 days. it didn't help, Same time, since the inflammation is so bad in my body many parts, so according to suggestions in this network, I increase prednisone to 10 mg. After two weeks, I felt a little bitter (about 20%). I am very sensitive to prednisone. I was surprised to increase to 10 mg, and didn't seem to affect me that much. I still have a lot of pain in my up back, shoulders, neck, light headache. I feel a little swollen on my neck, shoulder. No jaw pain, but the back of the ears have a little pain and swelling. I have a little scalp pain, temple area pain. I can see the vein on my right forehead protruded. My vision seems weak, but sometimes they are ok. I went to see the new rhyms last Thursday (Mar. 11) for a second opinion (or a consolation). He examined me and asked my history of PMR. He said he would write a report to suggest my previous rhyms to do a CT scan for my neck and shoulders. Because he was suspicious that I may have a GCA, and I am not responding to 10 mg prednisone.

I would appreciate it if someone can give me some suggestions based on this.

Also can someone tell me how long GCA developed normally?

After a long time (1 month) of high inflammation (ESR is 62, CRP is 26), It didn't not get control, What should I be careful of at this point?

Thank you very much for your advice. Your input is highly appreciated.

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12 Replies
123-go profile image
123-go

Your rheumatologists clearly have insufficient knowledge of PMR and its management. You do have symptoms of GCA and should not wait for the second rheumy to write to the first and then another wait for scans. I strongly advise you to go to the emergency department today with any paperwork/ reports you have received. I don't wish to alarm you but further delay may well affect your sight. If I am wrong, no harm done, but you do need proper attention and investigation as soon as possible. Keep us informed.

rosemw profile image
rosemw in reply to 123-go

Thank you very much for your good advice. Sorry for the late reply.

Coffeebeans profile image
Coffeebeans

I'm very concerned that if your rheumatologist suspects GCA they haven't immediately put you on a protective dose of pred at least 40mg and probably more like 60mg..

Your pain is probably still continuing because your pred dose isn't high enough to manage the existing inflammation.

I agree, this needs immediate attention and if wrong, no harm done but better than losing your sight.

I'm afraid I don't have much confidence in either of your doctor's.

rosemw profile image
rosemw in reply to Coffeebeans

Thank you very much for your good advice. Sorry for the late reply.

PMRpro profile image
PMRproAmbassador

I agree with the other 2 comments so far. And I imagine it might well have been the vaccine that upset the applecart in terms of the PMR symptoms flaring - a study shows that while immunosuppressed cancer patients don't develop much response to the first shot of vaccine, it is much greater with the second shot and that often makes people feel the effects. You have very high blood markers and they suggest you need considerably more pred than you are taking at present - I agree with the second one that this COULD be GCA. I don't agree with his strategy - GCA is a medical emergency. Would he write to another doctor suggesting an ECG be done if he thought it was a heart attack?

There is no "normal" time scale for developing GCA - everyone is different and it can happen any time.

rosemw profile image
rosemw in reply to PMRpro

Thank you very much . I am very sorry for the late reply. When I use the computer, I hurt my neck, shoulder, and back. So I don't use it often, especially for writing. But I did read your reply. You PMRpro, SheffieldJane, 123-go, Coffeebeans all give good advice. I am very appropriate for your help. Your network has helped many PMR & GCA patents. Here is my current information.

I didn't feel well for a few days, struggled with my PMR and possibly developed to GCA. I couldn't get to connect to my Rhymes. Finally, I went to the ER yesterday. They did a blood test, CT Angiogram (CTA) on my head and neck. Unfortunately, they couldn't do MRA, PET, biopsy there to test GCA. CTA results are normal. ESR, CRP is still high, but better than the early Feb. They want me to start a high dose of prednisone. I started to take 40 mg today. My rheumatologist called this afternoon, he thinks I also have some other problems that cause pain. He approached a plan to drop prednisone to 30 mg for 3 days, 20 mg for 3 days, then to 10 mg combined with methotrexate to control PMR, tapping down prednisone. Do we have a lot of successful stories for using methotrexate ?

Next week I will see my rheumatologist to discuss more about the treatment plan , and I don't know if he is going to do MRA? I am just thankful he is willing to help me now. Also I will see ophthalmology next week. Mainly my eyes sometimes not so bad, sometimes a little worse. One thing I notice, my eyes are very dry. My headache is getting better. I hope I do not have GCA. Thank you for reading my post and give me your valuable advice.

PMRpro profile image
PMRproAmbassador in reply to rosemw

Experiences with methotrexate are varied - I found it awful in terms of side effects, far worse than anything I have ever had with pred. Others don't have such problems. And the results vary too - it may help, it may not, but it very rarely replaces pred altogether.

rosemw profile image
rosemw in reply to PMRpro

Thank you very much for your information. I didn't feel methotrexate help when he first prescript it during I drop pred. from 15 mg to 12.5 mg, I had relapse. Yes, the side effect is scary, and I didn't feel it helped. But my rheumatologists said that is best way to help me to tap my pred, why I stopped? I will talk to him next week. Hope there are some better ways.

In my insurance network, didn't have too many rheumatologists near by. It is tough. I appreciate your help and the net work.

SheffieldJane profile image
SheffieldJane

I strongly agree with the advice already given. You need emergency treatment and to be on a protective dose of at least 40 mgs. My GCA and Large Vessel Vasculitis came on insidiously after 5 years of being treated for PMR alone. I was on 3 mgs of Pred and just didn’t feel right. Even more vague than your symptoms. The halo effect in my Artery ( in my armpit) was defined by a specialist ultrasound scan, causes for concern were flagged up by previous MRI scan ( head and whole body). I was put on 40 mgs of Pred and a case was made for Actemra as a steroid sparer because I had begun to develop side effects from long term steroid use. I know how dismaying this is but so much better than losing precious sight. Please act now.

rosemw profile image
rosemw in reply to SheffieldJane

Thank you very much for your good advice and share your own experience. Sorry for the late reply

rosemw profile image
rosemw in reply to SheffieldJane

How long did you take 40 mg prednisone for GCA? Thanks.

SheffieldJane profile image
SheffieldJane in reply to rosemw

Maybe 3 / 4 weeks, if I remember correctly. While my Rheumatologist applied to a panel for Actemra. Fast tapering instructions as soon as my first dose by subcutaneous injection.

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