GCA diagnosis

[Crommie]

I have lower back pain and stiffness mainly on the right side. This came on approximately two weeks ago and is slowly getting worse. Cannot walk properly and shuffle! Having two co-codemols a day which give me relief for a few hours. Did knock my hip/thigh about three weeks ago which hurt momentarily but wasn’t permanent. Do any of you lovely ladies/gentlemen have any idea if this is connected to my GCA which I was diagnosed with in early April? Tapered down from 40mg/day to 10mg/day (3 more weeks on 10mg before dropping to 9mg for 8 weeks. Thank you. 🙏🏻

[SnazzyD]

Oh dear. When you say your right side, where exactly do you mean? Is the low back pain near the spine? Going across the low back? To the side of the low back? In the buttock? Into the hip? Is it in the leg too? Sorry about the 20 questions. Have you spoken to your doctor ?

[Crommie in reply to SnazzyD]

Just right of bottom of spine into the buttock. Have checked with doctor and it isn’t my hip as that pain is in the groin, which this isn’t. Had to put numerous cushions on chairs to facilitate getting up, and one of those high toilet seats. Getting out of bed is a nightmare. 😱

[SnazzyD in reply to Crommie]

Did they offer any diagnosis? Was it over the phone? Does this ring any bells?

spine-health.com/conditions...

[Seacat30 in reply to Crommie]

That sounds like me just before I was diagnosed with PMR. I was adding extra thick cushions to my sofa and could not get up from my low toilet seat. I recovered on steroids but still have a tendency to pain where the buttock joints the thigh.

[Crommie in reply to Seacat30]

This has come qs a shock

[Seacat30 in reply to Crommie]

It does not have to be the same cause for you and me.

[Darcy2000 in reply to Seacat30]

I agree sounds like PMR…all symptoms similar to mine and I also have GCA…..but PMR came first

[Greynomad in reply to Crommie]

I have found that Remedial Massage is the best thing for buttocks pain. We are in lockdown so massage therapy is closed.As soon as it's open I'll be there.

[HappyDiamonds]

I have exactly that and at the same dose, I also have GCA. Have an X-ray booked in a couple of weeks arranged by my GP. Rheumy has put me up to 20mg Pred for a week to see if that helps as anti inflammatory tablets not a great deal of help. Murder getting up from chair and I can't turn over in bed. Getting in bed and out of bed in the morning reduces me to tears the pain is so bad. Reduced to using a stroller and zimmer from walking 6 miles a day with dog up until a couple of weeks ago. Totally feel your pain and frustration.

[Seacat30 in reply to HappyDiamonds]

I will be interested in whether your X-ray shows anything. I was X-rayed with that type of problem raging. Apparently nothing abnormal showed up. 15 mg of pred for PMR made me feel much better. (That bit of me gets slightly more painful/uncomfortable every time I drift the dose down a bit although it is nowhere nearly as bad as my original problem so far.)

[HappyDiamonds in reply to Seacat30]

I will let you know Seacat in case it helps, miserable isn't it 😟

[Seacat30 in reply to HappyDiamonds]

Horrible and inescapable. Good luck xxx

[Crommie in reply to HappyDiamonds]

In and out of bed is horrendous. Garden chair now in property with three cushions. My rollater is also being used inside. No help from gp and don’t know how to get hold of rheumatologist. Cannot get through to X-ray to make an appointment. It’s all a nightmare isn’t it. I feel your pain - literally. Keep fighting.

[Carriemetz]

After I was diagnosed with GCA in march 2019, I had the instant ‘recovery’ high doses of steroids give. But by July I’d developed severe lower back pain which was disabling. I cd hardly walk, turning over in bed was difficult etc and it seemed I was getting worse, not better. It began in the left buttock exactly as if someone was pushing a blunt instrument into it.(piriformis for which I did -painfully slowly!- exercises which were quite gd.) But then the pain spread to hip, groin, thigh etc. Probably weak or damaged lower back vertebrae at the root of it, but certainly a squeezed sciatic nerve - v painful, nothing touched it (except high dose gabapentin which at effective dose then gave me whole body hives! Oh joy!) Xrays of hip were clear. Eventually, slowly reducing steroids, over a long time, the pain went. Now, 2 and a half years later, still on low dose pred I have a weak back and treat it with great respect! But am mobile and more or less myself again. It may be your problems are coming from yr back and/or are high dose steroid side effect, as I believe mine was. Good luck. I hope u can weather the storm.

[Crommie in reply to Carriemetz]

Fingers crossed

[PMRpro Ambassador]

The fact that cocodamol helps the pain suggests to me it is more likely to be an injury that is making low back muscles spasm. And your replies suggest pirifirmis syndrome might not be far off the mark as suggested by Snazzy.

Greater trochanteric pain syndrome might also be a possibility - your GP is being rather blinkered I feel. And x-rays won't show anything when it is muscles. Both syndromes mentioned can result in sciatica - due to the muscles, not bones anywhere.

You could try a flooding dose of 800mg ibuprofen and a hot water bottle over the painful area.

[Crommie in reply to PMRpro]

Will have a word with Rheumatologist when I see him in October. GP is difficult to get hold of and doesn’t seem interested.

[cycli in reply to Crommie]

now where hve I heard that comment before? Maybe if you collapse in front of him he'll notice.

[PMRpro Ambassador in reply to cycli]

He'd dial 999 ...

[Decsgran]

I would try to see a chiropractor in the meantime. If that gives you relief then you’ll know it’s muscular or displaced bones.

[Woodly]

I have a similar situation but, on the evidence of an MRI I am told that the problem is caused by lumbar stenosis so it is as well have other causes looked at. Spinal problems are not usually dealt with by manipulation so it is best not to go down that road as a first step.

[Nightingales]

As it is affecting your mobility and quality of life so much it really warrants more investigation such as an MRI. Maybe your GP would give you a referral to a spine dr. I had the same pain and it was a slipped disc and spinal stenosis. I had successful back surgery but it doesn’t always come to that. Steroid injections and exercises can help. Hope you feel better soon.

[Crommie in reply to Nightingales]

Thank you for your information 😊

[Beevbops]

Hi CrommieI used to have PMR and recently developed various aches and pains which led to me seeing a Rheumatologist. One of my pain symptoms has been lower right back/ buttock pain. Rheumatologist and physio agree it's likely to do with the sacro iliac joint, which would give you pain exactly where you describe. I'm currently diagnosed with inflammatory arthritis/ reactive arthritis... They're not sure which. Anyway, I just wanted to point out that it could be your si joint. Inflammation there is more likely to show up in an MRI than X-ray.

Hope you get sorted.

Beevbops

[PMRpro Ambassador in reply to Beevbops]

And the SI joint problem doesn't have to be arthritis - it can equally well be due to tight muscles. Mine is - sort the muscle problem and it is OK.

[Beevbops in reply to PMRpro]

Yes, my physio did say it could be a mechanical problem there as my muscles around it were tight. However, it's also a prime symptom of spondyloarthritis. I think I was just pointing out that the areas she has pain in could suggest an si issue. Beevbops

[Crommie in reply to Beevbops]

💕

[Crommie in reply to Beevbops]

Thank you. 😄

[Crommie in reply to Beevbops]

Will mention that when I see rheumatologist. Thank you.

[Skysey]

Hi Crommie. I have GCA and I had severe pain in my right buttock and down my leg and into my foot after reducing pred and being on methotrexate. The GP thought it was sciatica but the pain felt like it was deep inside the bone. I was in tears as I found it painful to get out of a chair and was in so much pain that I couldn’t sleep. This pain disappeared after stopping methotrexate and completing a course of physio. I have no idea whether it was due to the medication, sciatica or GCA. Are you on methotrexate as well as prednisolone? Hope you feel better soon.

[Crommie in reply to Skysey]

Thank you.

[Grammy80]

You have gotten great responses and info from experienced folks. I simply wanted to add, GCA since 2019, that when I have gotten as low as 15mg it seems to awaken all sorts of aches and pains. Hope your rheumatologist gives you some insight.

I am so tired of chasing Drs around myself! Hopefully, some kind caveman will let me have his big club so I can wake a few up! PLUS, I'm in the states so I have to chase the insurance companies too sometimes. Take good care...💖

[Crommie in reply to Grammy80]

Thank you for your response. My aches started 3 weeks into 10mg. Although i felt great for the first 3 weeks. Went to gp yesterday with swollen feet. He wasn’t too worried about that, but I think I am not drinking enough water. He is taking bloods in 2 weeks to check for inflammation. Started with this GCA 9th April this year. At least we have the NHS in the UK. Sending good wishes.