Hello. I haven’t posted lately. I have been diligently tapering .5 mg every 5 to 6 weeks, previously on 9 years of pred with flare and set backs along the way including Avascular necrosis, osteoarthritis DDD to name a few. I am waiting for pain clinic spine injections and a referral to my back Dr. because my MRI has showed deterioration but that’s all I know. Months to wait apparently.
Anyway, currently over the last few days I have found it harder and harder to walk. Severe back pain, OK at rest, improves over the day. Today I can barely shuffle a few steps because of pain.
All my fears of osteoporosis and drugs have disappeared as I was referred to a specialist who absolutely reassured me that I am nowhere near osteoporosis, not to worry, my 30 years on HRT had protected me, and do my best with exercise. This, after 9 years of wrangling with my rheumatologist about taking meds. So my back problem is not likely to be an osteoporosis fracture.
So finally my questions. My history is to flare when I am about 8 mg. I am on 8.5 now. I am having horrible bed soaking night sweats and shivering episodes. Arthritis in hands worse. Hip bursitis very sore. Fatigue not too bad. I want to do so much more than I can. Grief ongoing because my daughter has metastatic cancer. Do you think an extra 5 mg for a few days will help? I am now taking my whole dose at 2 am and before this had found it worked better than 9.30 am. sorry for the long post. I am so conflicted because I have to get off or reduce Pred because of the Avascular necrosis, hypertension and diabetes.
Thank you so much for being there. X
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Nightingales
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That really sounds like a proper flare hatching - and never underestimate the effect your daughter's diagnosis is having on you. So sorry to hear that.
If they want you to get off pred then they need to come up with some help because it isn't going to happen on its own without the PMR returning in full force.
Thank you. I was afraid that is what is happening. I did take Leflunomide for a year but I felt ill the whole time so when it started affecting my liver I stopped. My less than helpful rheumatologist (I have talked about him before) says Methotrexate is all that’s left. I was doing OK, never pain free because of my other MSK problems, going very slow. But now my back and hips won’t work and I can hardly walk. I think, as you have affirmed, it is probably PMR building up again. I think that I will go back up to 11 then after 2 weeks go back to 9 again, going back to a snails pace tapering. I am also keen to reduce as the necrosis and fast deterioration in DM2, hypertension etc needing more and more meds has scared me. Do you think that sounds OK or should I increase more?
Yes, the constant gut wrenching feelings for my daughter are awful and physical. Going through it together is all we can do. Thank you.
It is quite possible that you have addition problems with the walking as a result of the MSK problems, especially the DDD. I have had a lot of problems walking since the big flare after my husband died and before Christmas I bought a rollator because I was struggling so much. Then my rheumy did an ultrasound-guided steroid injection into the sacroiliac joint region and it has achieved a minor miracle almost making the arthrosis in the spine a minor inconvenience. You are also on that pathway so no more to add there really. But if you had liver problems with LEF, I don't see MTX being any better. Is there no chance of seeing a more empathetic rheumy?
I think I would have to go through some process for a move to another rheumatologist. I haven’t before because I had an excellent GP. He has retired and the new ones although nice aren’t well versed in PMR and they have changed the practice culture to only dealing with one problem at a time.. I could have a private consultantation. I think you are right, a lot of it is the DDD. My pain dr is good so I am hoping the injections help. He has planned 4 spine and one into a nerve in the groin that is inflamed. I just have a feeling that a flare might be brewing as well. It’s a full time job sorting out all my health issues!
Grief is so hard on the body. I am so sorry for your loss. We just have to go through it, can’t go above or around. I am finding the uncertainty and grieving in anticipation very hard. Thank you so much for your reply.
It is - afterwards it becomes easier, there is no element of doubt. At least, that was the case for me. The waiting with a seriously ill person who wasn't able to live his normal life and no likelihood of a different outcome was hard.
You've got a lot to bear. Especially with your daughter. I'm so sorry you're living through this all. I don't know what to say other than that I'll pray for you both. Having had a very ill daughter too, I understand. But it wasn't while I was dealing with PMR and GCA. 💞
Thank you. Good advice. It’s so heartbreaking. She’s has a 14 year old and her husband died of epilepsy last year. Unfortunately she is in America so all I can do is be at the end of the phone and cover what insurance doesn’t.
Thank you all so much for your kind words. I know it’s not a typical PMR question but it is so helpful to talk about it. It’s not always easy to talk with family because I feel that I am bringing them down. I am so thankful that you are here ❤️
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