Vaccine reaction

[hurryupharry]

I had my 2nd AZ dose on Thursday. No headaches or stiff arm, however I did feel all of the pmr symptoms, pain in neck, shoulder and hips, exhaustion and a bit despondent. I have been happily tootling along on 4.5 mg of pred for over 6 months. I know it is said that shock or change may cause symptoms to flare, but during this year I have been diagnosed with cancer, had tumours and bits of body removed with no effect on pmr symptoms. So I am guessing that the vaccine had made my body do something, I am just wondering what it might be up to. Anyone experienced this or ideas what might be happening?

[SheffieldJane]

Anything I say would be a guess. Perhaps it was your immune system roaring back at this intrusion and it’s a good sign ?I hope you are tootling along again soon. I’ve got mine next week. The first one had no effect on my general rottenness .

[hurryupharry in reply to SheffieldJane]

Thank you, yes I am guessing as well. It just seems a bit of a coincidence. The reason I mentioned the cancer was to highlight that over the last few months I have had quite a few shocks and that didn’t cause a flare up. I hope that your second goes well, I shall give my GP a call and see what he says.

[SheffieldJane in reply to hurryupharry]

I know and thank you , and do!♥️.

[SnazzyD]

Might have the last straw having an immunostimulant being thrown into the mix.

[Kymandbob]

I had no effects from the first AZ and had my second on Wednesday. I had a few PMR like aches in my shoulders, back and hips...(more than normal!) in the evening which were gone by the morning.No sore arm or anything else though.

Hope you are feeling better. You are lucky to be on your dose of steroid. I cannot get below 8mg prednisolone and am again on the dead slow taper following a recent flare....am at 10mg at present..🙁

[hurryupharry in reply to Kymandbob]

Thank you, I’m glad to hear that your symptoms reduced again. Mine are still going on, I guess if it goes on much longer I will call the doctor and see if I can get a boost to the pred. You are right I am lucky, although I have been taking pred since 2015. I have found that generally it has worked and it had made my hair go curly, which I quite like!

[Telian]

I had my first vaccine with night time headache for two days only. I had my second on the 12/4. Within an hour my head was banging and painkillers didn’t touch it. Stood it for 10 days - GP assured me of no blood clot - symptoms would be very severe and that I’d had a bad reaction. In fact it had caused a flare.

I have GCA and PMR so I put the head reaction down to GCA. Then my usual PMR symptoms returned and I could hardly climb the stairs. I reluctantly increased my pred and symptoms improved. Took the fear of a blood clot away I have to say. I’m staying on that dose for a few days - might have to increase but am resisting. Currently on 9mg and having difficulty reducing even on .5mg.

I would still have the vaccine.

[gtate1914 in reply to Telian]

I only reduce by .25 mg, easier on me. Presently at 7 mg.

[Telian in reply to gtate1914]

Assuming you have uncoated pred?

[gtate1914 in reply to Telian]

Yes, uncoated, I live in the US.

it can be a little tricky dividing it into .25, but doable.

[Telian in reply to gtate1914]

Mine are Enteric coated because of stomach problems. If a small reduction helps you get there all the better. It can be so difficult particularly second time around. Got to 3mg once and felt human! Hope to get there again!

[hurryupharry in reply to Telian]

Me too the pmr symptoms are a pain, but I am glad to have had the jab. it’s been 4 days now. I have resisted upping my dose so far in the hope that my body will go back to how it was before the jab. I probably will call the doctor tomorrow if there is no change.

[Telian in reply to hurryupharry]

I tried to see it through - 10 days was not easy - I’m hoping it means I’m going to be well covered!

[Bachfugue]

I didn’t have any initial reaction to the first AZ vac.

However, after about ten days the pmr symptoms started returning, slowly at first then gradually more raplidly, along with sensitivity on my temples and scalp and chronic tiredness. Also some double vision with moving objects on the horizon. Worried that GCA might be a possibility saw the doc as well as an optician. Increased my pred dose from 5mg to 8mg. Within 24 hours symptoms decreasing. And all settled by about eight weeks after the vac. Now tapered to 7mg. Had my second AZ vac three days ago and so far fine, but will not hesitate to increase dose if symptoms return. I hadn’t attributed the flare with the first vac at first. But not surprising as our immunity systems are compromised.

[PMRpro Ambassador in reply to Bachfugue]

It does seem to be a recurring theme.

[hurryupharry in reply to Bachfugue]

Thank you, it’s good to know that it is probably a flare up that should respond to a boost in the pred dose.

[Jane424]

I have refused the vaccination because my flu shot brought on polymyalgia. With a blood cancer as well, I get very little protection from the vaccine - 13%. Am afraid of "poking the bear" Hope you feel better and so sorry about the cancer. You won't be as unprotected as with a blood cancer, but you will have less protection and need your second shot within 3 weeks. So sorry.

[hurryupharry in reply to Jane424]

Thank you, I am sorry that you have not been able to benefit from the vaccine. I have been very fortunate with cancer so far. My doctor, referred me to a specialist in late January by early March I was in London having surgery. My good fortune is that I have an unusual type of cancer for which there is a very small group of consultant surgeons, who this year have not been so busy! Still some way to go, but it’s ok. I hope that you also have some good fortune.

[Jane424 in reply to hurryupharry]

Glad you got such swift help. Hope you feel good and go on well. Mine is also very rare, but so rare they don't know what to do . Anyway, I refused further chemo which did very little good and asked for radiation, which I was initially refused and told it wouldn't do any good. But it did and I have been stable for the last 2 years. to everyone's surprise. Good luck going forward. I have already outlived my original survival prognosis to everyone's surprise! Keep safe. Jane

[Booge_15]

I had my second dose just under two weeks ago. I had no after effects with the first dose, however, this time I was overcome with fatigue for about 6 days. It was so bad I began to really worry about it. I couldn’t walk the few yards to the loo without feeling out of breath and absolutely dreadful . It has coincided with putting my pred back up to 15 as my ESR had risen up to 50 . Difficult to say the guess the reason for any of this!

[hurryupharry in reply to Booge_15]

Hello, it is difficult to know what is happening. I waited for a week, only because I had a pre op assessment on Wednesday and wanted to make sure that I didn’t do anything that would stop the op. So after talking to my Dr and hospital staff, they all agree that there a lot more people who have a reaction to the 2 nd dose. The reaction seems to be increased inflammation, not necessarily just the pmr inflammation. None of the medical people speculated on either causes or numbers. However, the pre op nurse said no problem about increasing pred before the op. And Gp prescribed enough to go to 15 mg for 10 days. Although I will try 10 mg for a week and then go back to 5mg.