PMRGCA unrelenting pain in left buttox and left leg. Getting worse. Past IV steroids- positive biopsy GCA

Pain has left upper body, now left buttox and leg. 15 mg of prednisone after 1 mg reduction a month. Had IV steroids for eye symptoms - helped . Biopsy positive. Self loathing with weight gain. I need To hear from on others -experiences with my symptoms. Seeing Back MD next week. Very discouraged by pain. Use alieve. Had ulcer recently

10 Replies

  • Hi, I'm sorry you are feeling so poorly. I think with some additional information folks here might be able to help more. When were you diagnosed? Weight gain is common but there are people who have drastically cut carbs and been successful losing it. PMR pain is typically bilateral so you may have one of the "add in" issues. The orthopedist should be able to help and perhaps send you for physical therapy. If they do, make sure it's someone who understands PMR. I found heatpacks helpful for pain. Be careful of Aleve. I know it helps - I used it myself prediagnosis but was told that it's very hard on the stomach to use continuously and shouldn't be used when taking prednisone. This is even more important I'd think due to your ulcer. Hang in there, rest, and take care of yourself.

  • Hi,

    As TooSore says doesn't sound like PMR GCA pains if it's only affecting one side. Could be bursitis or myofascial pain syndrome, hopefully your back MD will be able to help.

    Would help if we had a bit more of your history, e.g. Starting dose, when diagnosed, any problems up until now etc.

    Unfortunately weight gain is a problem lots suffer from, but if you can cut carbs and eat more green vegetables in particular it may help, and it does reduce as you get to lower doses of Pred.

  • Hi EmmaLaura, please be kind to yourself, you're not very well and do not deserve any self loathing nonsense. You are lovely, keep telling yourself.

    Chronic pain is very wearing. The pain you describe sounds like sciatica, I had it for 6 weeks once after being my daughter's nursery maid for a month in Australia. It was agonising, like piano wire from my buttock right down my leg.

    It's not part of PMR's pattern, life is unfair, we can get several things at once.

    I hope your MD is of some help. Maybe some gentle physio could help or Aqua- aerobics. Let us know how you get on. X

  • Thank you. I looked up sciatica and it appears to be what I have possibly. Pain is horrible and gone on for months with bladder involvement and pain worsening. I only take Alieve. Not great solution but can get up then. I do have spinal stenosis. My weight gain makes it all worse. What was good for your pain?

  • See below

  • You may want to discuss an epidural with a pain specialist!!

  • 15 mg of pred to begin tomorrow. 1 mg taper a month. IV 3500 mg pred last summer due to GCA , vision issues and jaw pain. The back pain is last 5 months- left buttocks down the left leg. Developed ulcer, now healed. Alieve not helping. Pain Progressing more rapidly now . Have bladder urgency and occ incontinence since around time of IV PRED last summer. Saw Mayo Clinic MD to get the GCA diagnosis and biopsy positive , saying I had it and it healed when I went on high doses of pred somewhere in that time frame.

    I have to have pain relief. Before I wasn't willing to take stronger meds but need suggestions on what will allow me to lead a normal pain managed life.

    I'm not used to being this restricted. Mornings before I can get food and then alieve or aspirin now carry horrible pain. Any help much appreciated and studied

  • Pain in the left buttock and into the left leg is probably due to either piriformis syndrome or possibly myofascial pain syndrome in the lower back. Both can trap the sciatic nerve and cause sciatica (that just means pain in the sciatic nerve, not what is causing it).

    However, if you have spinal stenosis and bladder problems, especially if it is worsening, I think you need to see a doctor urgently. Sciatica can also be caused by spinal stenosis and if that gets too bad it can cause far more than just sciatica.

    If you have PMR/GCA I assume you are on steroids? Pred? In that case it really isn't a good idea to take Aleve - naproxen is an NSAID and NSAIDs and pred don't combine well. And if you had an ulcer recently it is a real no-no. Even on pred you need a good dose of Zantac or a PPI to protect your stomach.

    As TooSore says - a low carb diet is the best approach to losing weight when on pred in particular.

  • Thank you so much. Slowly getting an understanding of it all

  • I obtained an opioid and one in am is working all day. Finally relief! Back surgery will be in April - opening for nerves has narrowed, and has to be enlarged. Spinal stenosis. I feel I am on a positive path now. Open MRI tomorrow: X-rays just done. I have the best back surgeon in Sarasota Florida . So relieved. I'll explore the pain shot if need be. This blog is a lifesaver, especially for PMR. GCA sufferer. My neuroOpthalmoligist has 98% success rate in preserving eyesight of GCA souls. I thank you all for your expertise and caring. I check everything here for perspective.

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