I’m at 4.5 prednisone and take Actemra weekly. Been on prednisone around 14 months. Was as high as 60. I’m basically grain and sugar free diet and no chemical. Grass fed beef and organic when possible. However I feel like Im going to die. Headaches and all the typical pain areas. I’m on two Vicodin daily with, Tylenol that has caffeine around 2 to 4 a day. Also 1.5 mgs clonopin daily but split up. I’m in bed most of time and get out for doc appointments and food shopping. Husband takes me. Also 36 years with fibromyalgia. Also just found 4 funguses in a special urine culture that detects mold and fungus in the entire body.
I also get a monthly 6 hr gammagobulin infusion because of inability to produce enough IGG antibodies.
Today I will see the rheumatologist. I’m in the states. So if you read this in UK I have time for any answers. Any suggestions on what my doc can prescribe for pain symptoms. I take 162 mgs Actemra a week.
I’m thinking I need to get off the meat. I thought I could do Keto diet but I feel worse.
I’m suffering so much but but I don’t want to die.
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Leeleep
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I am so sorry to hear this. I hope you find something. Perhaps you are right about the meat. I have a friend who swears she cured her lupus with this diet. She sure seems cured. And feels much better. I am doing it (quasi) but perhaps it could help you along with some traditional medicine of course... Best of luck to you. Also if it helps to do mediation at all my link to my yoga relaxation is on this site. (search Relaxation) and here is the diet. youtube.com dr. Goldner lupus I do NOT know if it is good. But it's vegan and I suspect cannot hurt.
It is very hard to suffer so. My heart goes out to you. At one point I had thought about acupuncture if I couldn't find any other relief. I never had to do it but it was a thought just in case. What could it hurt?
Acupuncture did not help me. My pain is directly correlated to food allergies or food sensitivities. I am starting to believe once I get the mold problem fixed I will be better. Thanks for caring .
There’s a lot going on there and it sounds very difficult for you both. I don’t know how long you’ve been on the pain killers but is there any chance you now have rebound headaches from medication especially Vicodin which can give narcotic induced sensitivity? Another thought is whether you are making sure you are replacing the proteins, vitamins and minerals like Vit B’s that are in foods you are avoiding?
To make matters more complex I get pain from B complex. Many supplements go through a fermentation process and those that do will trigger my headaches and pain. I take some isolated b vitamins.
Has this started since the Actemra? It also seems bizarre to me to give someone an immunosuppressant when their immune system is underactive in terms of producing immunoglobulins. It is also possible the fungal/mold result is not unconnected with that.
And how fast have you reduced your pred dose since being on Actemra? The slow reduction to allow adrenal function to return to normal still applies - it doesn't come back by magic and the Actemra doesn't have any function there.
And I agree with Snazzy's comment - pain killers sometimes cause pain too.
My docs explained to me that their is no conflict of interest taking Actemra with IVIG. I was fine for many months and on Actemra. My labs are fine. The IV snd shot is on a different mechanisms in the immune system. My rheumatologist will be doing a government study for medical marijuana and I’m hopeful to get in the study. If I do, I will report back to the group. 💗
Hello
I’m so sorry to read about your awful pain, as PMRPro asks how quickly have you come down on your Pred?
Sometimes we can be over Medicated or there may be an interaction between the Meds? That’s worth asking your Pharmacist about & maybe a full review of all your Meds by your Rheumatologist today?
We have Pain Management Specialists which maybe a good route for you to consider, they are usually anaesthetist’s & they look at the whole picture which l think you may benefit from.
I do hope you get some answers today, please let us know.
I’ve come down slowly on the prednisone and the Actemra replaced it. prednisone in the double digits is remarkable on pain but as we know we are limited to the time allowed on extremely high doses. I followed proper protocol to dose down and I’m on 4.5 mgs prednisone and will
continue to slowly dose down. I’m on very low dose of pain med . Hardly on any prescription pills. Just 4 . BP, pain, anxiety and prednisone. Daily Forteo shot and weekly Actemra. Used to be on nothing more then Tylenol before this charming disease . Was into holistic health to benefit the many years of fibromyalgia and headaches. Looking back I realize that fibromyalgia was a walk in the park compared to GCA/PMR. Thanks for input.😊
Oh Leeleep this won’t do at all! I am afraid that I would be looking at the “ wonderdrug” Actemra with great suspicion. You seem so much worse!! Maybe it is not for you. Your doctors need to act quickly. I am so sorry, it sounds like a nightmare. I wish relief for you from the bottom of my heart. 🧡
Actemra has been very good for me. It enabled me to come down from high dose prednisone. I was stuck at around 40 for a long time . On it for many months and no problem.
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The pred story featuring awful gps
