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My headaches are wearing me out

Posted , 8 users are following.

sandra28555
sandra28555

Dear friends, I must enlist your help to see what would help these chronic headaches. I am currently on prednisone 50mg and my biopsy has been done but I am hurting so bad with my head and neck pain. What has helped you that I may learn?

0 likes, 11 replies

11 Replies

  • Guest
    Guest sandra28555

    Posted

    Sounds like 50mgs may not be enough. I had to begin at 80 in the emergency room but quickly dropped to 60. Do you have the results of your biopsy? At 50, you may get a negative even with GCA. Hope you feel better soon...keep in touch. Ann11195
  • MrsO-UK_Surrey
    MrsO-UK_Surrey sandra28555

    Posted

    Sandra, although a 40mg starting dose proved successful for me when diagnosed with PMR and GCA, some people find that they need 60mg or even more to get control of the inflammation.  My head pain resolved in just a few hours of taking the first dose of Pred, but I was told by my rheumy that if my head pain returned I was to get in touch immediately.  You haven't said how long you have been on the 50mg dose, but you would be wise to get in touch with whoever is treating you immediately in case you need a higher dose because if it is GCA you need to get on top of the inflammation if only to protect your eyesight.  The biopsy is not 100% reliable in that the large cells they are looking for can sometimes escape the small portion of artery removed.  However, a positive biopsy can be be very useful in case there is any doubt about the diagnosis in the future.  But just bear in mind that if the result is negative it is still possible to have GCA.  If you experience any sudden problems with your vision, such as pain or blurring, then seek emergency advice, at A&E if necessary.
    • bri21
      bri21 MrsO-UK_Surrey

      Posted

      hi maybe you van help me ,GCA 5 years ago PMR still on sterions 8mg sulfalazine as now they think sero negative Arthritis.but last 3 days have had pain in back of head not constant no tenderness to scalp or temples or jaw .not sure if u can get pain at back head with GCA 

      a

      ziNE

    • MrsO-UK_Surrey
      MrsO-UK_Surrey bri21

      Posted

      Bri, as you probably know, Sulfasalazine is a disease-modifying anti-rheumatic drug occasionally used in PMR where someone is having continuous difficulty reducing their steroid dose, but mainly used to treat various arthritic conditions, including rheumatoid arthritis.   So if they suspect that you now have sero negative rheumatoid arthritis, the Sulfasalazine will hopefully help on both counts.

      As far as GCA is concerned, as the inflammation of GCA is found in the arteries, it makes senes that any artery in the head could be affected - for me the pain wasn't confined to one area of my head but all over, and, unlike your present pain, it was constant.  You haven't said how long you have been taking the Sulfasalazine, but head pain is a known side effect. However, just to be sure, do get the pain checked out with your GP - better to ask too many questions rather than too few where GCA is concerned.  From your own history with GCA, you will, no doubt, be aware of the warning signs to look out for, but if you have any problems with your vision, no matter how small, seek emergency advice immediately.  Good luck and do let us know how you get on.  

    • bri21
      bri21 MrsO-UK_Surrey

      Posted

       hi spoke to clinic and they said if not constant and gone off no problems .

      i have just had a bowel scan and they have said my bowel inflambed ,seeing a consultant tuesday . My crp is 120 and also bloods iron has droped ,on iron tablets .i take naproxen which is the only thing that helps with pain, Sulfasalazine been on about 6 weeks does not seam to help . now i have a mouth ulcer .preds 8 .thought of just having a couple of days on 12 preds ,do u know if i could just drop back to 8 mg then or do i have to taper back down slow again . my bowel was perfect 3 years since ,but after a year on mycophenalate ,now Sulfasalazine my system going pot. I feel i am going nowhere ,any help would be apprecated .

    • MrsO-UK_Surrey
      MrsO-UK_Surrey bri21

      Posted

      Hello again Bri.  It  does now sound as though it is the bowel that is the cause of your recent problems - CRP can rise in response to any inflammation, including inflammatory bowel disease, and your on-and-off head pain isn't surprising alongside that raised CRP and increased bowel inflammation.  I believe migraines can be a symptom of bowel disease, including Crohns.

      If you do decide to increase your steroid dose from 8mg to 12mgs, I think you need to remain on the increased dose for long enough (more than a couple of days) to see if there is an improvement in the symptoms, meanwhile getting the CRP repeated to see if that has reduced as it can also be a useful guide as to a timely reduction in steroid dose.  You could then perhaps try a reduction of 1-2mg in the first instance to 'test the water' before reducing to, say, 9mg and remaining there for a bit longer before going back to 8mg.  It is generally easier to get back down to a previous dose the second time around following a flare in PMR, therefore I would think the same would apply in inflammatory bowel disease.

      To help with the mouth ulcer, you could try having some 'live' yoghurt each day for a few days;  also check that your toothpaste doesn't contain Triclosan as that can aggravate mouth ulcers.  Sensodyne is one of the best toothpastes to use.

      Also, I assume you have had your Vit D levels checked?  If not, do ask for a Vit D blood test - many people are deficient and not least those with inflammatory bowel disease.  A deficiency can also lead to pain in similar areas to those of PMR.

      Also, ask for your Vit B12 levels to be checked - any deficiency can cause problems and can easily be corrected with injection of Vit B12.

      I'm glad you got yourself checked out with the clinic - now I hope with the increased dose and continuous careful monitoring you will start to feel much better.   

    • ptolemy
      ptolemy bri21

      Posted

      If your CRP is 120 you do I would have thought you do need to increase the pred to reduce the inflammation. One thing taking Naproxen and pred together is not a good idea, particularly if you have bowel problems, but as long as your doctor knows what they are doing. I increased from 9mg to 15mg recently, stayed on 15mg for a few days then dropped by 1mg a day to 10mg, which worked fine. I think if one stays on 15mg for a while it takes longer to reduce back again, but don't rush it as you don't want more problems.
  • lodgerUK_NE
    lodgerUK_NE sandra28555

    Posted

    I started on 60mg and the relief was within 2 hours.

    Some people need higher and also sometimes intravenously.

    If 50mg is not controlling it - you need to see  your medics as a matter of urgency.

    Your sight is precious and if anything happens it is not reversible.

  • Anhaga
    Anhaga sandra28555

    Posted

    Yes, if the head pain persists, you must follow up at once.  GCA is considered as serious a medical emergency at heart attack or stroke.  Better risk a false alarm than losing your sight.  Hope you feel better soon.  
  • ptolemy
    ptolemy sandra28555

    Posted

    You poor thing. As the others say it sounds as if the dose is not high enough, can you check with your doctor about increasing it asap? Perhaps even 80mg but at least 60mg. 
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