I am sick as a dog. Weak as a kitten, can barely function. nausea, loss of appetite. Weight loss. Muscles feel like they are being pulled off the bone. I have PMr/GCA, Pmr 20 years, GCA 10. I am on 5th infusion of Actemra, Prednisone down to 6mg. First time down to 6mg. in 3 years. I have to get off prednisone. Stomach bleeding last year, both biopsies from two endoscopies show likely culprit is prednisone. So, I have no choice. Feels like Actemra not doing much. Plan is to double dose of Actemra next month if SED rate does not go down.
I also got off Pepcid a week ago. I was put on Pepcid 3 years ago, increased from 20mg. per day to 80 mg. today after stomach bleeding started. Pepcid just stopped working, So, I switched to 15mg. per day of Prevacid, which works fine, but is not an H2 blocker like Pepcid, so am wondering if I could be going through a double withdrawal, Pepcid and Prednisone. I am too sick to work in my sewing room, or do much of anything. The plan is also to put me on an anti-anxiety medication next week. Can anxiety make one feel this sick?
There are a lot of changes going on now, medically, and emotionally, but most of this feels physical and bio-chemical. Any one go through anything similar?
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phebamom
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I already commented on your question to DadCue. Those are all symptoms of poor adrenal function and that is a very real possibility when you reduce quickly below 8mg pred. Actemra allows you to reduce the pred you need for PMR/GCA but only low pred and time will encourage the return of adrenal function.
There isn't usually a withdrawal problem with H2 antagonists, it is the PPIs (the -azoles) that cause that problem and even then replacing them with another acid-blockers sorts the problem with them.
Has the CRP gone down? The ESR and CRP cannot be used to monitor disease activity when you are on Actemra so the ESR remaining high does suggest there may be something else going on that doesn't respond to IL-6 blockade.
I have the same thought. My SED at 3rd infusion was 54, at 4th infusion it was 67. that does not seem right. There was a death in the family in between 3rd infusion and 4th. Don't know what that may have done to numbers
The only thing I can think of that might raise my SED and keep it up would be diverticulitis. I had a very bad attack two weeks ago, and it had been building before that time, almost constant nausea and loss of appetite. I have taken antibiotics for the issue and it is somewhat better. I am 66 and have had diverticulitis since the 1980s.
Very possibly then - can send CRP up too. I'm sure DorsetLady said her markers were up when her husband was so ill before he died. So even stress will do it.
So here’s what I think. I have had PMR and GCA since 2013. I take protonic‘s every day 40 mg and have been even before the prednisone. I produce tons of acid. Usually the infusions ring down The blood numbers falsely. It doesn’t seem to be happening with you. I think the pro is right you have another issue and it might be diverticulitis. I also have adrenal insufficiency and stay on 7 mg of prednisone. I have no intention of reducing that number I tried it does not work. I can’t tell you I take Actemra Shots every other week and when it is time for my next shot I start to hurt. Next week I go for a bone density. Cannot imagine what that will say since I broke my femur and it did not heal. I think you need to get checked out that early for other auto immune diseases. I also take Clonopin at night for stress.
I am curious. How do you know you have adrenal insufficiency? I am thinking it is time for me to see an endocronologist and see where I stand. I can't stay on prednisone. I have had a bleeding stomach for the past year. Biopsy of tissue shows prednisone is more than likely the culprit. this last bout of diverticulitis is the worst I ever had. I don't know what brought it on. It was pain all up and down left leg, groin, and around to back. The inflammation had to be very bad. Bactrim calmed it down. I am on probiotics, that helps a lot. Strange, I have had diverticulitis attacks since the mid 1980s. this one last week was a lolla paloozer . I am on half dose Actemra for first six months. Dr. said if that does not do the job will be going to full dose. Six months is next months and I think that is where it is headed. How did you break your femur? Are you on a bone medication? I refuse to take them because I already have a bone disorder called MGUS, and I instinctively feel the bisphosphonates are not for me, as they work on the same part of the bone that the MGUS deals with.
I am on prolia. I fell broke my femur. It did not break itself and then I fell. When I go lower than 7 mg of prednisone I get very sick throwing up palpitations and unbelievable fatigue. The 7 mg will not kill me. It’s the high doses I have been on for8 years. . It has been my adrenals that gave gone to sleep.
Hi: Mayo clinic diagnosed "undertreated GCA". I was tested for ankylosing spondylitis at Mayo, and just about every other disease. I have some IBS, have had it and Diverticulitis off and on for decades. From what I read Diverticulitis and other bowel issues are a leading cause of death from long term prednisone use. My doctor described it this way. the same thing prednisone does to our external skin, thinning, weak blood vessels, easy bruising, etc. it is doing to every internal organ in our body. To those who say they will stay on 7mg. I say, do everything you can to protect your digestive system. I am hoping I can heal my adrenal glands and will not need to be on any dose of prednisone. From my lips to god's ears. Prednisone is the devil in disguise. I have been on prednisone off and on for 10 years. I think my body has reached its limit, and the prednisone devil is seeking his due. I have a lot going on, but I think most of it can be traced back to one drug. My counselor is fearful of what reducing prednisone is going to do to my emotional state. The prednisone has tamped down emotions for years. Prednisone damages every single part of our body. But OMG, I would not have survived the last ten years without it. As I said, the devil in disguise. On a positive note, my blood pressure has totally normalized. I have been able to cut BP meds back by 1/3, and that is still too much. All of this happened after I stopped the 80mg of Pepcid AC. On the Ask A Patient site high BP is listed as a side effect of Pepcid. Who knew!
We have a University in Columbia, MO. The doctor who read my temporal artery biopsy wrote it in ambivalent language. I was grossly undertreated in Columbia. At my best friends advice (nurse practitioner), I changed all doctors to jefferson city. The rheumatologist there immediately sent me to Mayo in Rochester. 2017, 14 times driving across Iowa. It got old! They asked to see original biopsy, not the written report. Biopy showed marked histiocytes, and a lot of giant cells. The rheumy at Mayo was angry. he said I had undertreated GCA. I have received excellent care at Jeff. city. Though, not a university, they are excellent, physician owned, and communicate well with me and with each other, a blessing, Right now I am on the lower dose of Actemra. I have a hunch it will take the higher dose to effect a change. Thanks for your positive input. It means a lot to me.
My counselor and my primary are in conversation, and there is probable cause to start me on an anti-anxiety medication. I have skin ulcers on my back and head and arms. The cause is anxiety. Prednisone causes anxiety, and it is the number one side-effect of pepcid. Glad to be off that drug. And it did not even work well. We recently had a death in the family, a 3 month old baby, so that has not helped. Is anybody else on anti-anxiety meds. They are thinking of a drug called BuSpar.
The problem with the digestive system and prednisone is as I stated above. What prednisone is doing to your outer skin, i.e., thinning, narrowing of vessels, easy bleeding and bruising, is also happening to the lining of your digestive system. It is not a matter of any coating or protectant preventing an actual physical damage, like eating a habanero pepper. This is insidious because it is happening at a molecular level. Prednisone is damaging and changing the actual bio-chemical construction of your digestive system. No matter what you do, and I have done a lot over the last ten years, (My poor tummy!) prednisone will damage your stomach and digestive system. One of the number one causes of death of RA patients is Diverticulitis caused by years of NSAIDS and Prednisone.
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