1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Reducing Pred and flu shot

Posted , 9 users are following.

janice01811
janice01811

Hi am reducing down to 3 1/2 mg of prednisone next week. I was diagnosed with PMR October 2013 started out with 15 mg and now down to 4  I can say not without any pain. I believe that you will have some pain till this PMR goes into remission. What I want to know is what can you take the days that you are experience pain and stiffness ? I will be seeing my doctor on Friday and would like to know what can she give me to help me with the bad days I'm experiencng. I am also a diabetic and prednisone has done havoc on my numbers and that is another reason why I want to get off the Prednisone. Also I am due for my flu shot and I am worried about getting a bad flare. As I know someone who did. This PMR for me all started 10 days after my flu shot last year. I am afraid that I will go back to the beginning of this PMR if I get my flu shot. Has anyone had a flare after receiving their flu shot this year ? Also I never gained any weight while on the higher numbers of prednisone and now that I'm on 4 mg I'm gaining weight and my diabetic numbers are up and down what could cause that ? I think my body is so messed up from being on prednisone for a year. I live in the US and they seem to do things alot differently here where PMR is concerned they went you off prednisone as soon as possible. Need advice. 

0 likes, 17 replies

17 Replies

Next
  • Nefret
    Nefret janice01811

    Posted

    As you say you are in the USA, not sure if I can really help.  I am diabetic, when on high doses of steroid my blood sugar levels go way up, but as we know they will come down as I reduce the dose no one worries too much about it.  The additional weight I gain on high doses also plays a part, but again, that (mostly) disappears as I reduce.

    I've been having a flu jab for the last 20+ years, 14 of those on steroids, never any problems.  It doesn't impact at all.  However, there have been others who feel a flu shot triggered PMR, but others who feel it might have been a virus (possibly flu) so this has to be a very individual thing.

    From what you have written about the pain and stiffness you are having, I think it would be said here that you are not taking enough steroids to keep the PMR inflammation at bay.  Is your doctor not concerned about the inflammation you have putting up the blood sugar levels?  It can do so.  To me it seems to be contradictory to take the steroids for PMR, but not enough of it to give any benefit.   The downsides without the upsides!  The benefit was what I wanted as I had no quality of life without it.

    I never found any painkiller which had any effect on PMR pain.  The only thing which is effective is Prednisone, and on my own behalf, I don't think anyone either ought to, or need to, take additional painkillers while on steroids.

    • davidmelville
      davidmelville Nefret

      Posted

      I love that . . . .i don't think anyone ought to, or need to, take additional painkillers on steroids. It rings right, it sounds right, it looks right BUT it's not in my case book.

      Whether it's the Rhummi getting stroppy and trying to force MTX as a steroid reducing agent, because still in pain, or a kindly GP prescribing Naproxen to help with the pain, my experience is that any additional pills are preferable to a little extra 'Pred'. I'm not a medic, expert or the like but everything inside me says if it's just PMR then control it and give the patient a life with the right amount of Prednisolone. I can't see the point in reporting a reduction in Prednisolone if one is in pain and covering it with pain killers. I've done it . . . It's madness.

    • Nefret
      Nefret davidmelville

      Posted

      Quite right - I should have made it clear that I was referring to PMR pain ONLY.  There are plenty of other conditions which can run alongside PMR and require painkillers.  Been there, seen it and got that!
    • EileenH
      EileenH davidmelville

      Posted

      Especially since naproxen, like all NSAIDs, is not a good bedfellow for pred. And it has some not entirely pleasant side effects. 

      At least my medical consultants here take pain seriously - and since there is like NOTHING I can take safely alongside my other medication they are a bit sprightlier about investigating the cause of the pain and trying to deal with it not cover it up!

  • Oregonjohn-UK
    Oregonjohn-UK janice01811

    Posted

    Hi Janice - I had a flu jab only a few weeks back with no ill effects - I'm down to 10 mg after 5 months with no other medical problems.  I also have had the odd ache rather than pain at reduction time but I took the advice from this forum on slow reduction and I put my progress down to that.  Hope all goes well.

     

  • EileenH
    EileenH janice01811

    Posted

    They often have a habit of wanting you off pred as quickly as possible in the UK too - but as long as it is active you will need some pred. I you aren't accepting of that then you might just as well say "no pred" - and that is from either side. 

    To be down to 4mg in barely over a year is excellent progress - but I will dispute the statement that suggests there must be pain. Some people have very little pain, the majority have minimal pain and if you aren't at least reasonably comfortable it probably means you are on too low a dose. 

    If the pain you have is due to PMR then the only real answer is a bit more pred I'm afraid. I know very few people for whom pain-killers have achieved much, possibly they took the edge of severe pain but were certainly no total answer. If it is happening during the time you reduce from one dose to the next then slowing the reduction down often helps. There are a couple of reduction schemes on here that seem to help a lot - but when push comes to shove and you are at the dose that is JUST enough to control the inflammation and therefore the symptoms then no reduction scheme will help. That dose is what it is. 

    I had my flu shot last week - this year not even a sore arm, certainly no flare. Many people claim they "get flu" from a flu shot - that isn't true. PMR flare? I don't know, I never have. 

    For some people pred leads them to gain weight, for others it stops them being hungry and they lose weight. It didn't make me gain weight, the weight redistributed to my face and midriff. But it is also possible to lose weight when on pred but you do have to be very disciplined and keep the carbs low - and that also helps with blood sugars. We have several ladies who were diabetic pre-PMR and they say that you just have to be more careful about what you eat. 

    But for your basic question: what can my doc give me for the pain and stiffness I'm afraid the answer is that if it is PMR that is doing it then only a bit more pred is likely to do the trick. But if the other pain is osteoarthritis or other muscle problems that may not be the answer. However, the only painkiller that is OK alongside pred is really paracetamol - acetaminophen to you - and even then you must be careful as it too has side effects.

    • janice01811
      janice01811 EileenH

      Posted

       Thank you for your advice I will talk to my doctor and see if she thinks  I should increase the prednisone.
    • heather39822
      heather39822 EileenH

      Posted

      Hi Eileen. All this talk of flares is giving me the heeby-jeebies as I have two more days on 15mg and then start my reduction to 12.5mg. But I have had an incipient headache for the past week or so - not a blinder, just an uncomfortable presence that won't move with Paracetamol - and a slightly stiff neck. Would you advise me to delay my Pred reduction or go for it?

      Because we can't get a dose less than 5mg here, I was thinking of a variation of your reduction plan: alternating 12.5mg and 15mg daily. Do you think that is too fast?

      Sorry to bother you - but I fear you are the font of knowledge on the subject and mentor and advisor to us all! 

    • EileenH
      EileenH heather39822

      Posted

      Using my plan is actually even slower than that Heather. To start you would take 12.5mg for just one day then 6 days of 15mg, then one day 12.5mg, 5 days of 15mg. You reduce the number of days at the higher dose by one each time until you get to alternate days so I have always thought it would work well enough for people who have to reduce in bigger steps than 1mg. Having got to alternate days you build up the number of days at the new lower dose one day at a time as well.

      Just as a reminder - here's the link to the thread it is written out in, in posts 4 and 5:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

    • heather39822
      heather39822 EileenH

      Posted

      Thank you once again Eileen for your endless patience and advice. Will follow the plan. Watch this space...
  • kern44
    kern44 janice01811

    Posted

    Janice-

    I'm in the US and had my flu shot this year on Sept. 30.  PMR symptoms started Oct. 13th.  First couple weeks I thought it was Lyme, now  I'm starting 40 mg of Pred a day.  Off to the Rhummi tomorrow.  I'm planning to ask the same question

    • janice01811
      janice01811 kern44

      Posted

      How did the Rhummi vist go ? What did he say about the flu shot ?
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.