For a month I have had trouble walking. I use a cane and do a lot of leaning. It started because of pain in my left leg, mid-calf. Rheumy nurse said it was due to newly diagnosed venous stasis; cardiologist said no it doesn't cause pain. Anyway things just got worse...need wheelchairs at doctor offices (the only place I go). It is hard to do things in the house. Today was excruciating. My rheumy nurse gave me gabapentin. But it didn't do anything. I do think it has to build up in your system but...after 4 days I was hoping for some relief.It feels like Freddy Kruger is slicing my thighs front and back, hips/sides, back area by waist.
I started Actemra 2 months ago and have normal inflammation markers...been many years since that happened. Based on that I was told to drop from 30 to 25 pred and it was ok. Most of the things I was dealing with were my lower legs.and knees which were not PMR issues. With my walking issue and the venous stasis issues I didn't really feel PMR pain.
I talked to the rheumy nurse this morning and told her how bad things were. She told me to keep taking the gabapentin. I told her because of where the pain was and the fact that.nothing had relieved the pain when this started through to.now that it might be related to.PMR and results of my moving my body in crazy ways trying to do simple daily living things. I told her I thought we should try increasing the pred. She was resistant. I told her I didn't have to stay on the dose for a long time but enough to see if it helps. She said up 5 and if doesn't help a little more.
I did 5. Nothing. I did a second 5.....nothing. so my plan is to add 15 to my current dose of 25. Maybe a full dose at one time might help
We will see. I don't know what to do. I can't handle much more. It is the worst experience.
SO: Anybody else experience this? What do you think about the pred? Know of any treatments? I.don't know if stronger pain meds might work. I can't get to my pain doc and he can't treat without seeing me. So....thoughts?
Thank you in advance. Be well.
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Wallysma
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I can understand your desperation but you really need your doctor’s collaboration as you seek your pain relief. Is the Cardiologist no longer having an input after diagnosing venous stasis? They simply must guide you towards pain free comfort. I must stress that unfortunately Actemra does not work for everyone. My PMR did affect my knees, legs and feet incidentally. I hope you can find the right combination of relief very soon.
Hi Jane...the cardiologist is sending me to someone else but this new pain has gotten in the way. I don't know what to do but it is constant....I need some relief for sanity but also so I can go somewhere to figure this out. I think it's too early to know about the Actemra....it has helped my inflammation levels. I could not believe my test results. With all of my autoimmune conditions they are always high....even on the prednisone they would improve for sure but never that low normal. I had pain in my legs, hips, butt, back from the beginning of PMR...the girdle as I have seen it called. So that is why I wonder if the stress of the past.month has kicked the PMR in high gear but with what might be damaged nerves. So....
Thanks for replying. It is all so crazy. Be well, Jane🌸
Sounds like you might need someone to think about how your nerves are being affected higher up stream. What was the nurses’s rationale for the Gabapentin? What did they think was going on exactly?
She gave it to me because it is used for nerve pain. This started after I saw them. I go back on 26th. It is hard to get appts for anything since covid. It is insane. It took months to get a diagnosis on my legs because of needing tests done, doc visits, months apart. So not sure what to do. Thanks for the reply, Snazzy.
Whatever it is, it is unlikely to be PMR since you are on Actemra and 25mg of pred which on its own should manage PMR and the Actemra does too. Of course the inflammation markers are low - that is because it is the way Actemra works and is meaningless in assessing how active the disease is. After 2 months it should be starting to work, it doesn't work instantly - although some doctors seem to think it does,
I don't think it sounds like "normal" PMR/GCA and I think your doctor should be taking more interest as there are not typical problems.
I told the rheumy nurse that the markers meant nothing but she doesn't agree. I felt the Actemra was helping a bit when I reduced the pred it was fine. And while the labs were great as you said that is how actemra works. She and the doc live by the labs. I think one issue for me is the pred helped for sure but never gave me the relief it has others. The biggest problem has always been this area...the girdle. Which before PMR was never a problem. So I wanted to see if anyone else experienced this.....and separate from that any ideas on treatments. I need some relief.
Thanks Ms. Pro. As always you help a lot...and I am grateful.
PS. They added a test on my adrenals to my labs coming up. I told her it made no sense to me on all this pred. So it will beeaningless...right?
I'm beginning to think that doctors should have to pass an exam before being allowed to use Actemra, they know next to nothing about how different it is from DMARDs
oh that sounds awful. I wonder, as you have trouble walking if it could be a joint or spine problem. Has your dr considered an X-ray or MRI. If the extra pred hasn’t helped they should consider something else.
I see her on the 26th...the doc that is. I think I need whatever can show the damage from RA, OA, PMR?, and whatever this new nerve pain is. Not sure what that is......The extra pred....not sure yet....it might have helped a smidge but will see how the day goes. The good thing is I can drop down if it doesn't. But something has to, 🙏 please God.
I’m so sorry you’re going through this Wallysma! It’s so hard when your body gets divided into different doctors and you have to wait months for appointments, tests, etc. and different doctors are telling you different things with no coordination. Plus being in pain makes it hard to do anything!
I’m like you are with new pain and trying to figure out what’s causing it, but not as severe as what you are going through!
Like you I’m having a lot of difficulty walking and must use a cane everywhere. My original diagnosis of PMR/GCA was from pain in the shoulder area and occipital head pain. New pain is lumbar spine, knee, hip, bicep, and ankle mostly on one side.
I would agree that yes, you need more tests. From somebody! I did have x-rays of some body parts which showed osteoarthritis and something going on in the lumbar spine. I haven’t had that explained yet but see an orthopedic doctor this week.
Are you seeing anyone other than the rheumy nurse about this pain?
I am sorry that you.are having such a bad time. I hope you are able to get some relief soon. It is so hard to deal with intense pain for any reason but having to figure out the why and to treat new pain is so draining. I have desperate moments for sure. I have lived with pain of some kind for decades from autoimmune conditions and OA. This is different. I will see the rheumy doc on 26th. I have a PC but he is booked up and he would probably send me to.someome else. I am not sure I can drive. I would rather cut the extra appts out.
I hope the news about your back is good. Please take good care of yourself. Hang in there.
So sorry to hear about your trials and tribulations. I experienced the constant nerve shocks in my back on and off for years. New GP thought it caused by muscle tension and prescribed diazepam for when it happened. Worked a treat and ensured good nights sleep. Not sure if applicable to you but thought I would add it to the mix for you to ponder xx
I’ve just had full blood tests, showing nothing unusual , including normal markers for PMR.
I’m on 9mg pred, I’m also on 175 mg Pregabalin, spread throughout the day, this is a similar drug to gabapentin , which I’ve been on for months, without any relief. I was prescribed it for spinal stenosis and three herniated disc’s.
Both my daughters have been nagging me, saying, I shouldn’t have to live with this daily pain. I think a litter exercise helps, if you can manage.
Thanks for the reply. I am sorry you are going through this. I have lived with pain for years, but never like this. Last night it got worse and now I can't really walk at all. I am thinking of going to the ER. I hope you get some relief soon. This is crazy.
Hi wallysma, apart from my chest back neck and shoulders my girdle area is by far the worst I even get sciatic like pain down my legs I think the bursitis and piriformis is inflamed and makes my legs painful I'm on 15mg pred now for 3 weeks and is helping a bit every time I taper it comes back stronger again , I feel for you it's horrible.
I am sorry you are having to deal with it. I had your experience and ended up on a high n dose of pred...but it never took care of that pain Then my leg started hurting limiting my walking. Then the "shock" type pain started a week ago now it is so bad I cannot walk.and even when I sit I still feel it.
Geez, I feel for you..all I can add is the Gabapentin can take up to 2 weeks (maybe more really from what I read) I am on 1800 per day now, but it doesn't work for everyone..they would then try Pregabalin (same type of drug, but *different*)..and again, may not work. They throw these out like candy instead of painkillers now at pain management offices. Also, I was up to 40 mg Pred to get relief..now on 27.5 for 2 months and holding there for now. Maybe try your plan for a week. My other advice is to keep on the doctors, if I hadn't I don't know what would have transpired..I was at the end of my rope.
Have you had an MRI? Demand one. If you have DDD (Degenerative Disc Disease) the nerves could be compressed or constricted by bone spurs and THAT is the worst pain ever..I had to have a spinal fusion..but they can usually be managed by epidural steroid injections, and I STILL have to get them in my neck because new bone spurs have formed. The pain is a 10 when it wears off. An MRI can rule that out for you. I will pray for you.
Thank you for sharing your experience with me. I am on a really low dose of the gaba....300 2 x day. I feel like I am going to lose it...unrelenting pain. Today my left knee started throbbing non stop. The pain is in my legs so while my back is sore it is not the issue. It is my left lower and both front thighs. The spasms are so.intense! I just want a break from it. I have not had anything yet. Waiting on doc appt. I will talk to her about some kind of x-rays. If I don't get some pain relief I don't know how I will be able to go.
I wish you luck with feeling better. I am sorry that you are dealing with pain like this. Take good care.
Just to clarify, after initial neck pain (10/10), the pain afterwards each time it flared again after the injections (usually 5 months later), ALL the 10/10 pain was in my arm, even down to just above the elbow.never in the neck again..it's the nerve down that trails either down the leg or arm that hurts..it felt like I was getting hit with a baseball bat at times. It never relented under a 7/10 until the injection. Went 5 nights without sleep basically and would roam my house in tears all night. Please demand that MRI, if nothing else it'll rule that out if it is muscle spasms instead, which it very well may be hopefully.
I am so sorry you are having this experience. I also had impingement in two areas of my spine like Sidra said, it can cause these symptoms… an mri showed the
Problem vertebrates and after steroids epidural , which by the way was a miracle treatment… I have been better than ever, able to walk without walker and sleep in comfort for the past 10 months.
Oh my you're going through it. I empathize as I'm experiencing way too much pain right now. Girdle on up and wrapping around front ribs. ER last night for 4 hrs. Couldn't sit there any longer. Triage gave me 2 extra strength Tylenol. Last night cried with the pain. Only thing that helped relax my muscles was my anxiety med Clonazepam. Walking with a rollator at this time. I am a spasmed mess right now. On 30 mg. of Pred as had some breakthrough PMR pain. It does not help the back. See my Rheumatologist on June 26th. She prescribed Tylenol last time I was there so not putting much hope for this time either. Hugs to you.
I suffer a lot from this type of pain and it is very debilitating. I take Pregabalin which is similar to Gabapentin, but it takes weeks rather than days to become effective and the dose needs to be adequate. Short burst of Ibuprofen, this may give you some relief until the Gabapentin kicks in. Not too often of course, because of the pred you are on.
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Rheumy's concern about infection?
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