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newly diagnosed

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Guest
Guest

I’ve been suffering with severe pains in both my legs, top to bottom, & also my buttocks, for a couple of months..worse in the morning then gradually reduces. Around the same time I’ve had daily shooting pains in my head & quite often a dull ache behind my left eye.

On my  3rd visit to my GP I was seen by a different Doc who immediately told me he was almost sure I had PMR/GCA, arranged an urgent blood test & prescribed 20mg Prednisolone. This was on Thursday morning, I have to go back this week.

I’ve been researching as much as I can & I find this site interesting & helpful. My main concern is that I don’t have the main symptoms...no neck, shoulder, upper arm or hip pain,  no jaw pain or blurred vision. I keep reading that steroids will give a dramatic improvement within a couple of days but I don’t feel any different. I have other health issues & I don’t want to take steroids for any length of time unless it is essential. I’m hoping somebody out there may be able to give me some advice or guidance please. Many thanks.

0 likes, 11 replies

11 Replies

  • Anhaga
    Anhaga Guest

    Posted

    Can you ask to have a temporal biopsy done as a matter of urgency, before the steroids erase any possible evidence of GCA?  Not that a biopsy is definitive proof if negative, but a positive result is helpful.  If you have GCA then 20 mg isn't enough.  What tests have your doctors run?

    There are a number of other conditions which present with PMR-like symptoms.  You can google polymyalgia differential diagnosis to get some information.  Could any of your other health issues be the cause of the additional pain?

    Hope you get some answers soon.  Not much point taking a medication like pred if it isn't helping.  But give it a chance!

    • Guest
      Guest Anhaga

      Posted

      Hi Anhaga, thanks for replying I’ve been worrying about this all weekend. I’ve got an appt with my GP for tomorrow & I will ask for a temporal biopsy as I really don’t feel it is GCA.  Obviously I’ll take the Pred if I have to but nothing I have read makes me feel it’s the right diagnosis.

      I’m very lucky to have recovered well from lung cancer surgery 4 years ago so any new pains are a concern. Thanks again.

  • Michdonn
    Michdonn Guest

    Posted

    PoppysMum, has the 20 mg eased the pain at all? I started with pain in groin, upper interior leg muscles, then the shoulders, etc. I stayed on 20 for several weeks before I felt okay, then started to taper. I the thought were GCA I am surprised you were not started at a higher dosage. Good luck on your journey try to stay positive and smile. ☺️
    • Guest
      Guest Michdonn

      Posted

      Hi Michdonn, many thanks for your reply.  Everything I have read suggests the pain should have eased considerably by 72 hrs but mine is still the same. I did notice 40mg seems to be the recommended dose for GCA so I will discuss this with my GP when I see him tomorrow.

      I really appreciate these two replies as not many people seem to know much about this condition. 🙂

    • Michdonn
      Michdonn Guest

      Posted

      PoppysMum, you might need a high dose and for some people it takes more time to work than for others. It takes time for me, but I am totally PMR pain free. Good luck on your journey. I am off to take a bike ride feeling good. Thinking positive with a smile. ☺️
  • EileenH
    EileenH Guest

    Posted

    Give it a week or 10 days - and in the meantime rest a fair bit, don't try to push through the pain. If the pred doesn't have at least some effect by then either you need to try 25mg or it isn't PMR - and I think that would be my suspicion. Not everyone gets the immediate miracle - I did but I know a lot of people who have had to wait a couple of weeks to get a significant difference at 20mg - if the dose isn't quite enough for you it will take longer.

    It DOES sound as if you have back muscle problems - spasmed lower back muscles, especially the piriformis which is what causes buttock pain, can cause the kow back and leg problems you describe and if the upper back muscles are in spasm they can cause the neck and head symptoms - they do for me.

    Don't worry about the pred at present - you can take pred for a few weeks and it is still easy to wean off quickly. I took 15/10/5mg/day each for 2 weeks and stopped without any adrenal function difficulty - other than the PMR coming straight back! Which isn't the same problem.

    Having found this forum - have you also seen the Homepage with our Resources post? Lots of links to info and other sites.

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

    "I will ask for a temporal biopsy as I really don’t feel it is GCA" - the TAB is only positive in about half of patients anyway so think hard before having it. If there is any suspicion it COULD be GCA then you need to be sent to a rheumatologist as an emergency since GPs really are out of their depth, often cannot request a biopsy themselves or not quickly enough and it needs to be done before being on pred too long. But your description of your symptoms is not encouraging for doctors to suspect GCA (whether rightly or wrongly).

    Where are you? Country/region would be helpful.

    • EileenH
      EileenH

      Posted

      PS - I'm assuming the UK since you are on prednisolone. The PMRGCAUK charity has a helpline who may be able to help you sort out your suspicions - direct Q&A is better than the forum in many ways.

    • Guest
      Guest EileenH

      Posted

      Hi Eileen, many thanks for this information. I’m from NW England. I’m due to see my GP tomorrow as blood results are now in. I’m definitely going to ask for a referral about the pains in my head, my legs are very painful & make it difficult to look after my dog but I’m not as worried about them. I was thinking the two conditions may not even be related!  I shall just try and get my concerns and my new knowledge across tomorrow. I am so grateful for this help, thank you 😊

    • Guest
      Guest EileenH

      Posted

      Thank you, I’ve had a quick look & will get in touch after my appointment tomorrow. 🤞

  • Anhaga
    Anhaga Guest

    Posted

    Hope you get some answers.  Do let us know how you get on.  Good luck! 🍀

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