Flaring after Covid vaccine

[bunch1974]

Hello all...I had my second Covid vaccine this past Thursday at noon. That evening I just had a sore arm and fatigue. Yesterday (Friday) the fatigue was much worse and I also was nauseated, increased all over body pain, very fatigued and a bad headache. Today again I have all the symptoms except the nausea. The one thing though that is worrying me is very bad pain on the very top of my head. I can’t even think about touching the area or the pain increases and throbs. I have had this issue for some time off and on, but never to this degree. I have mentioned it to my GP and Rheumatologist on more than one occasion but they brush it off and just tell me to take pain relievers. The first time I saw the rheumatologist and I mentioned it he felt my temples and said it wasn’t GCA.

Has anyone else had this issue? Today even after taking my meds and a pain reliever it hasn’t gotten any better. I’m very concerned it’s not being investigated.

TIA 💕

[Hidden]

I think that you are correct to be concerned. You could ring 111 and ask to speak to a doctor and remind them about the link between PMR and GCA. Don't panic but be firm for answers.

[bunch1974 in reply to Hidden]

Yes, I am going to call my dr on Monday morning and hope that he listens and doesn’t attempt to shrug it off. He seems like a decent guy and listens to me but doesn’t always elaborate on anything unless I press it. Wish me luck !🍀

[Hidden in reply to bunch1974]

Yes needs doing. Good luck

[123-go]

I wouldn't think that a rhematologist can say that you don't have GCA by simply feeling your temples. Did he order blood tests? I don't want to worry you but you should contact your rheumatologist and push for further investigations. In the meantime, if you have any visual symptoms ring 111 or go to A and E.

[bunch1974 in reply to 123-go]

I had a visit with the rheumatologist the day before my vaccine for the results of what he called more thorough lab work than had previously been done. He said that everything came back “good” and still believes it is UCTD / PMR and to continue reducing my prednisone. I started on 10 mg a year ago then 7.5 and now wants me to take 6 mg for a month and then reduce again in April.

[123-go in reply to bunch1974]

I feel your case may be somewhat complicated by the fact that you have more than one autoimmune disease. I can't see any benefit in reducing the Pred while you are still having pain-in fact the opposite.

I hope you get more information when you speak to your doctor. Is that the GP or the rheumatologist?

It's unsatisfactory when doctors brush you off. You need someone to to give a clearer explanation so don't be concerned about asking questions.

[bunch1974 in reply to 123-go]

I’ve often wondered if I should have been on a little higher dose to begin with. I was in a lot of pain and had been for several months before being able to get an appt with the rheumatologist and then when Covid hit I only had a few “phone visits”. At 10 mgs I was never completely pain free but was thankful for at least enough relief to get back to somewhat normal. I’d love to be able to taper lower and eventually stop the Prednisone, but not if I’m going to go back to square one with the pain and possible GCA developing.

Thank you for your caring advice 💕

[Nap1 in reply to bunch1974]

I don’t know why some doctors called them selves rheumatologist. PMR with 10mgs. it’s not high enough. You should have started with 15 or maybe even 20. When I first got PMR I was pain-free after three days of 20 mg. True I was on steroids for two years but my rheumatologist reduced it too quickly. I kept relapsing. This may be what is happening to you. Then I got GCA and that was in 2015. I’m still on prednisone but now it is for my adrenals. 7 mg to be exact. In the US we don’t have to wait so long to see a doctor and in each case both of these doctors know that it was PMR and GCA just by the blood test. Take care of yourself make sure you are on enough prednisone.

[123-go in reply to bunch1974]

The starting dose of Pred for PMR is normally between 15mg and 25mg here in the UK. I'm guessing you are in the US (?) where it's sometimes noted that PMR is less well-understood and therefore less well treated. I can only comment on the PMR as I have no knowledge of your other conditions. I've had a look at your background and with the symptoms you describe,e.g. being unable to stand from seated etc, a starting dose here would be at least 15mg. So, I strongly feel 10mg would indeed not have been be sufficient to get a grip on your PMR and a reduction now would be a big mistake. It would seem that the inflammation in your body is alive and kicking.

Even though your blood work was considered "good", to reduce your dose, in my opinion, would be detrimental. Symptoms are very often considered over blood test results.

I would push for 15mg Pred and stay there for at least 4 weeks and then follow one of the plans recommended by PMRpro or DosetLady.

Once again, I'm commenting only on PMR.

I wish you well with your next appointment. Please let us know how that goes.

[bunch1974 in reply to 123-go]

Yes, I am in the US and you could very well correct about the lack of understanding and proper treatment of PMR. My rheumatologist seems to prefer more the diagnosis of UCTD. I’m aware that I have symptoms of it also but my own experience with the pain areas and researched symptoms PMR is the main part of what I’m dealing with.

I have gone back to my original prednisone dosage of 10 mgs until I see the dr and it has helped, thankfully.

[PMRpro Ambassador in reply to 123-go]

He might dismiss GCA if he can feel a good pulse - of course that doesn;t mean it isn't affecting somewhere else!

[123-go in reply to PMRpro]

Yes, I see.🙂

[bunch1974 in reply to PMRpro]

I’m thinking that’s what he did. However I do experience jaw tenderness and pressure also. My biggest symptom as of now is a very sensitive, painful scalp area on top of my head. If I even lightly touch it for any reason it immediately starts throbbing and will do so for quite a while. Ibuprofen and then finally a pain pill did little to alleviate the pain. The pain and pressure stays just below the surface as long as I don’t touch the area.

[PMRpro Ambassador in reply to bunch1974]

Do you get claudication pain in your jaw when chewing?

[Nap1 in reply to bunch1974]

Do you know how that I think of it my only symptoms for GCA was a really tender scalp. I was getting a haircut that day I was getting my hair washed. When my hairdresser rubd ymy scalp I shot up from the seat with vile pain. . And yes I had a headache. That seem to be enough for them to send me for a biopsy which came back negative but again my blood numbers were high and so I was considered to have GCA.

[pammy_hyland]

Yes I had this on the 5th day after my 1st Covid vaccine and it lasted 4 -5 days . The only thing that worked was 2 of the original Alka-Seltzer I felt really dodgy ..

[Karenjaninaz in reply to pammy_hyland]

I felt bizarre for several days but I don’t know it it was a tapering issue; I also think I miscounted my pred and shorted myself.

[bunch1974]

I am in the US and I’m not aware of a system like that here.

[PMRpro Ambassador in reply to bunch1974]

There is an FDA reporting system: FDA Adverse Event Reporting System (FAERS) Public Dashboard

I can't get the link to copy and paste - just google it

[Karenjaninaz in reply to bunch1974]

There is a reporting system for vaccine side effects because my daughter used it. It’s not just for the Covid vaccine though - I think.

[PMRpro Ambassador in reply to Karenjaninaz]

The reporting systems are for all medications of all sorts

[Larachez2102]

Hi can I ask did you have the same symptoms on your first jab. Some say you get it on one of them. I was extremely ill after my first jab. Hope your better. Xx

[Karenjaninaz]

I had the Pfizer vaccine last week and had a sore arm- expected. I felt somewhat weird off and one for about a week and my IBS acted up. Had scalp areas of tenderness that went away after Tylenol and never came back.

[PMRpro Ambassador]

I think that it is essential to point out that these are the sort of adverse events that have been reported in the past with the full range of vaccines as they are developed. They don't represent the range of already established or suspected adverse events with the Covid vaccines.

[PMRpro Ambassador]

The list of potential adverse effects ,,,

[yogabonnie]

how are you now???

[bunch1974 in reply to yogabonnie]

Thank you for asking yogabonnie.

I saw my rheumatologist last Monday. He shared that my lab work didn’t show any increased inflammation and then he spent a lot of time feeling around my scalp and temples looking for pulses and found them to be fine. I had been slowly reducing my prednisone from 7.5 to 5, but decided to go back to 7.5 for 2 weeks and then start a slow reduction again if I felt better.

I also had an eye exam appointment that same afternoon and other than dry eyes and some blurriness there was no signs of GCA thankfully.

I wish I could say that I feel much better, but honestly since my second vaccine shot I feel like I’ve gone backwards. I am exhausted after doing very little and have increased pain in-spite of lots of rest, eating well and taking vitamins. It’s so frustrating and depressing 😢