As i have shared in recent posts, my GCA flared up several months ago. I was put back on Prednisone 40mg, and have restarted the Actemra monthly infusions. I am now on Prednisone 30mg and tapering.
I have also been recently diagnosed with ocular myasthenia travis. This autoimmune disorder is causing my right eyelid to droop, plus blurred and sometime double vision. I am still doing testing regarding the ocular myasthenia gravis.
Then I had an epidural 2 plus weeks ago for severe sciatica. The epidural has helped the sciatica pain. However, I have continued to have horrible muscle spasms and mid back pain which is increasing in intensity. My physical therapist contacted the physician who gave me the epidural about my continuing back pain. That doctor is now ordering a full set of spinal X rays of my spine for "scoliosis." I will be consulting with the doctor after the X rays are done.
I am just overwhelmed and so exhausted. Any hours of sleep is rare. I am trying to keep some perspective about all of these additional problems but finding it rough. Thanks to all of you for reading this and listening to me. I know so many of you continue on this difficult journey., Thank goodness we can support one another.
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Joyful13
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" I have continued to have horrible muscle spasms and mid back pain which is increasing in intensity."
My similar-style back pain is entirely due to spasmed muscles from myofascial pain syndrome. have they not considered that? And if you have a scoliosis that will just contribute to the muscle problem. Mine originally was always made far worse by a wisdom tooth that was erupting unopposed and affecting my bite - the back muscle problems have been far better since it was removed.
I will ask the doctor about myofascial pain syndrome when I see him after the X rays. Thanks for your reply. What helps you when you get the muscle spasms. The pain just about puts me to the floor!
At the time? Nothing really to be honest although I have spent a lot of time in the past sitting against a radiator! And I have spent 2 or 3 days at times sitting bolt upright in a high backed chair, not moving. Really not very practical! I have learnt to avoid the activities that make it worse - sweeping and vacuuming being primary it has to be said! Even just leaning forwards can be enough.
The last time it was so bad I couldn't move I was admitted to the local hospital and they used their preferred option of intravenous high dose steroid and pain killers in the morning and i.v. diazepam at night as a muscle relaxant. It worked wonderfully well - until I developed a very rare but known severe reaction to the i.v. diazepam! I was pretty well pain-free by then so I was handed over to the pain clinic where they used the second-line approach which uses manual mobilisation of the MPS trigger points, local steroid injections around the trigger points and a technique called wet needling. Over a period of several months all my back muscles were softened up and the pain resolved - but kept returning though never as bad as it had been. I had a wisdom tooth that was erupting at an angle and affecting my bite. Removing that made a massive difference and I have had about 3 years with no problems at all.
Recently my shoulder muscles were sore - especially where my bra-straps lie. The GP repeated the wet needling which helped reduce the discomfort and I have just seen a rehab doctor - a prerequisite for getting physiotherapy here - and as her 3 sessions with manual mobilisation have helped a lot but not dealt with it fully I am getting physio. Some time this decade...
In the past I have had a lot of relief from Bowen therapy - I had 2 very good therapists in the UK. The one I have found here is less good. I have no idea how it works - I only know it does for me! Sambuca on here also swears by it.
I have - the medical people here appreciate what myofascial pain syndrome is and don't dismiss it but do something! Unfortunately, the pain clinic specialist moved to become a GP further up the valley (all politics but hey ho!) but as far as I know still practises the pain management but privately. So I'm dipping my toe in the water to see what else I can access on the healthcare ticket before paying privately for her. I am, after all, a poverty stricken pensioner
Someone on the lupus forum dragged himself to a gig by his favourite band a couple of nights ago. He was really worried about managing it - but today feels better than he has for months. Sometimes all it takes is to take your courage in both hands and overstep your boundaries. If you go about it right, the way he did, it may be just the ticket! That DOESN'T include housework...
Joyful, I feel your pain...literally. Diagnosed with GCA/PMR 27 months ago....have gone through many Flares. Up and down on Pred dosage. I can hardly believe I now use the word 'Just' when talking about The GCA or PMR. So much has happened since then. Several months ago, started having some neck and lower back pain. Told it was Degenerative Disk Disease. After testing, was given two rounds of six injections in my neck. Took some time, but helped. Now, I'm waiting for injections in my lower back. It's acting like a sciatic problem. I've spent two weeks bedridden....consultation is on the 27th. I am taking Vicodin...first time to take pain meds and not doing well. Sick most of the time even with Zofran thrown in. Couldn't make it through the day without them, though. In the meantime, I'm using heat patches or heating pads along with Arnica cream and a few others. I so understand the fatigue. I'm doing next to nothing and am exhausted.
Oh my goodness, I am praying for you as I write this email. Thank you for sharing with me. I am so sorry to hear the extreme pain that you have been suffering. I hope that the injections in your lower back will give you more relief.
I think that I am trying to do too much, given the amount of pain and lack of sleep. I have some patches that I will try today. I am so exhausted that it is difficult to even think right now.
sorry to read your news I do hope you get the help u need
will remember you in my prayers.
Good luck xx
Hi Joyful, You, like so many others, have had such a time of it. I'm so sorry for these continued unhappy surprises you are dealing with.
I wanted to ask you about an issue you posted about a year ago, I think. I am having a new problem with pain, stiffness and pitting edema in feet, ankles, hands, wrists, and to some extent elbows/knees. I have been reading articles published over the past several years about this being a PMR phenomenon that has not been widely followed or reported, but that it is a frequent issue. I know you were wondering if it was caused by the Actemra and/or predisone. I have boosted my dose of pred from 10 to 15 to 20 to 25 and have only had minor relief from symptoms at this point. Just went to 25. Did yours resolve or did you receive any clear feedback on the cause?
Thanks for your thoughts and concern. I don't remember my post that you are referring to, but I have had edema in my ankles much more frequently now. I am not sure what is causing this symptom. Has your doctor giving you any validation regarding your symptoms with Prednisone? I have reduced to Prednisone 20 mg as of yesterday. i have an actemra infusion this week. Will see what happens.
Hi Joyful...he has only said that he thinks it is related to flare of PMR and not prednisone so has upped my dose now three times. Unfortunately, it has mostly only improved my hand swelling and reduced pain in feet and hands. The edema is still pretty bad. So weird. The lack of response to the pred makes me wonder if it could be seronegative RA. I have no medical background so my reading of these many articles doesn't help much. I see my rheumatologist on Thursday so will see what light he can shed on this, if any. Hang in there, Joyful. Hope all goes well with your Actemra injection. I want to try it, but have to do step therapy first (my insurance requires). It sucks because I don't want to even try Methotrexate, but that is step one.
I totally understand having to go through the steps. I also was on Methotrexate before starting the Actemra. The Methotrexate did not help me, but each person is different. These protocols of care are enough to do us under sometimes.
Do you live in the U. S. Since you are possibly being offered Actemra, I thought you might. I live in Sonoma, CA, about an hour northeast of San Francisco. Our medicare is through Kaiser which is a very good medical facility, but you have to go through their steps of care.
I wish you the best in your rheumatology visit this week. Let us know what you find out. Take care.
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