Crohn's Disease Forum » Your Story » HELP! Suffering withdrawal symptoms coming off Steroids


11-28-2018, 06:16 PM   #1
Honey
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HELP! Suffering withdrawal symptoms coming off Steroids

Hi there, any good advice for dealing with weakness, tiredness and pain after coming off Steroids. I having been on Prednisolone on and off for four years, first for Crohn's , then muscle weakness. I reacted badly to other meds and treatment for Crohn's. This year after tapering down, I had to see another Specialist as my Adrenal glands were not producing enough Cortisol.
I was on Hydrocortisone until Blood tests revealed I was back to normal.
Delighted at this news, but since August , am now suffering side effects. Tiredness, weakness and recently pain in my legs, throbbing pain. I have become limited in how long I can stand or walk!
I do not wish to go back on Steroids as I do not need them for Adrenal glands, so any advice would be helpful. Has anyone else experienced this ? How long did it take to get back to feeling strong and well again?
11-28-2018, 07:06 PM   #2
Scipio
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How is your Crohn's doing? Is it worsening due to no longer being on prednisone? Were you switched to another Crohn's drug?

If the Crohn's is worsening the tiredness and weakness may not necessarily be due to lack of prednisone but may be directly due to the Crohn's itself or due to anemia brought on by the Crohn's.
11-28-2018, 07:37 PM   #3
my little penguin
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Have you contacted your endocrinologist?
Sometimes you donít need a daily dose
But still need what is called a ďStress dose ď under certain conditions
Definitely call them as well as your GI
They should be able to help

Ds has adrenal insufficiency
But does not need a daily dose of Hydrocortisone
Only needs a stress dose at certain times or circumstances
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11-29-2018, 04:57 PM   #4
Honey
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Hi there, thank you for your replies. Yes, my Crohns has worsened and I am on Pentasa just now. A new drug for infusion has been suggested but my Consultant is holding off just now, as I have a history of reacting badly to meds. I have had Pancreatitis , in hospital etc. I see my Endocrinologist in January but have already had that special blood tests Syncth,,which showed levels of Cortisol to be normal. It is interesting that you speak of a Stress dosage, I shall certainly speak to my Consultant about that. Thank you. I am a little stronger, but struggling to walk any distance because of weakness and throbbing pain in my legs. I look forward to feeling better than this. I was doing Tai Chi and travelling a distance to enjoy the class, but cannot do that just now.
12-01-2018, 12:18 AM   #5
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I can't do corticosteroids for very long, or I start having a whole laundry list of reactions to them. Pentasa (mesalamine) for me is like popping a very expensive Tic Tac. Does absolutely nothing.



Have you spoken with your doctor about Humira? I only started a couple of weeks ago and I can already start to tell a little bit of a difference. I've had a little more stamina this week and the other routine Crohn's symptoms have calmed somewhat. My nurse told me it would probably take about 4-6 weeks before I could really tell a difference, but if what I've been feeling this week is a preview, I have very high hopes.
12-01-2018, 01:00 PM   #6
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Hi Mountaineer 01,
I was on that a few years ago, then switched to Remicade infusions. I ended up in hospital for three weeks as I became very ill with a lung infection. As I said, I unfortunately have a history of bad reactions to meds. I know Pentasa is mild meds, really for Collitis, but have been asked to increase dose then see what improvement there is on a C.T. Scan, if any?
My main problem, just now, is this weakness and leg pain in walking, having coming off Steroids. Thank you for your advice,
12-01-2018, 02:55 PM   #7
my little penguin
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Have you seen a rheumatologist?
You may have been treating arthritis associated woth Crohns without realizing it .

Good luck
12-02-2018, 03:18 PM   #8
Maya142
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You absolutely need to take stress doses until you have a normal ACTH stim test. My daughter also has adrenal insufficiency and she required hydrocortisone daily for quite a while. About 9-10 months after stopping Pred is when she went to stress doses and stopped the daily hydrocortisone.

You need to take a stress dose when you are sick or under some kind of physical stress - such as a procedure with anesthesia. If you have a fever or a lot of diarrhea, those would also be times to take a stress dose.

My daughter's ACTH was not detectable when she was diagnosed with adrenal insufficiency and her cortisol was 1.1 - very low (6.3 was the lower limit of the range I believe). Once her endocrinologist saw the results and also heard her symptoms (severe fatigue, diarrhea, weakness) she sent us straight to the Emergency Room to make sure M was not in an adrenal crisis and to give her IV hydrocortisone.

An adrenal crisis, as I'm sure you know, can be fatal. It occurs when your adrenal glands cannot make enough cortisol to deal with a physical stress - like an illness, dehydration, severe pain, sedation for a procedure etc.

Usually you will be given tablets to take a stress dose and an injection (IM, not subq) in case you are far away from a hospital. Our endocrinologist says any time you use the injection (for example if you are vomiting and can't keep the pill down), you need to go straight to the ER.

It is very serious - we have had to rush to the hospital more than once because taking an oral stress dose didn't work for my daughter. She was given IV hydrocortisone ASAP.

Adrenal insufficiency can cause a number of vague symptoms - including weakness and pain. I would urge you to contact your endocrinologist or at the very least, ask your GP to test your cortisol and ACTH. If they're very low, typically you will go back onto hydrocortisone and be weaned off VERY slowly.

How long ago did your steroid taper end? Or are you still tapering?

If you do have adrenal insufficiency or even if you have recovered and your adrenal gland function is normal now, you can't really continue to treat your disease solely with steroids. Every time you go back on steroids, it's like taking a few steps back. As long as your body is getting cortisone from an outside source (like taking Prednisone), your adrenal glands will not work and you may end up back on daily hydrocortisone.

That said, I understand that with active disease, sometimes you HAVE to use steroids. But then the endocrinologist should be managing the steroids, not your GI, so that you are tapered off properly, because each time, it's possible your adrenal glands will stop working properly.

What have you tried besides Azathioprine and Remicade? You REALLY need to treat the disease with maintenance meds. What about something like Entyvio (Vedolizumab)? That typically has a lower risk of infection since it works on white blood cells in the gut, so it's gut specific and not as systemic, from what I understand. It typically works better in UC than Crohn's, though it does work for Crohn's colitis sometimes and it is approved for both diseases.

Stelara may also be an option if you have Crohn's Colitis. I don't think it is approved for UC though. But it blocks a different target than anti-TNFs - it's an IL-12 and IL-23 inhibitor.

Simponi or Golimumab is also used for UC - that's similar to Humira but given once a month vs. every 2 weeks.

Try to remember that even if you have had bad reactions to several meds, doesn't mean you'll continue to have them in the future. So even though Remicade caused a lung infection, that does not mean Entyvio or Stelara would - they are different kinds of biologics.

Good luck!!
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12-04-2018, 04:39 PM   #9
Honey
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Hi Maya 142,
thank you for your lengthy and informed reply to my concerns. I have already had that special blood tests,, twice recently, confirming my Cortisol levels are back to normal, very good in fact. So, I will be seeing my Specialist into January and will have a lengthy conversation with him about what has been happening to me. I already discussed this with the Staff nurse on the Ward and await a letter which is usually sent from my Consultant , after my hospital investigation. I am not suffering those dizzy spells that were scary , when I first had to go on to Hydrocortisone to correct my Cortisol levels.
It is puzzling to them, I think, but I know I am suffering the effects of coming off Steroids, even though I tapered down slowly as instructed. Thank you again for your concern.
12-04-2018, 08:21 PM   #10
Maya142
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Well, if it is not due to adrenal insufficiency, then it should get better shortly after being off steroids. That is confusing -- definitely a puzzle.

Did you have the ACTH stimulation test or just the cortisol/ACTH blood work? The ACTH stimulation test takes a while - about an hour, I believe. Typically you are given something intravenously or IM and so your blood is drawn at least twice - before and after the IV ACTH is given.

my little penguin can tell you more. We were told that my daughter would have to take stress doses even after her cortisol and ACTH were back to normal. Once we do an ACTH stimulation test, which shows specifically if your adrenal glands can respond when stressed.

I'm sorry if you know all this or have discussed all this. Just wanted to clarify that we were told that there are two kinds of tests that my daughter would have to have, before they say her adrenal glands had fully recovered.

The other option might be some kind of autoimmune muscle inflammation that typically causes weakness - some kind of myositis possibly? It may be worth seeing a rheumatologist.
12-04-2018, 08:22 PM   #11
Maya142
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Well, if it is not due to adrenal insufficiency, then it should get better shortly after being off steroids. That is confusing -- definitely a puzzle.

Did you have the ACTH stimulation test or just the cortisol/ACTH blood work? The ACTH stimulation test takes a while - about an hour, I believe. Typically you are given something intravenously or IM and so your blood is drawn at least twice - before and after the IV ACTH is given.

my little penguin can tell you more. We were told that my daughter would have to take stress doses even after her cortisol and ACTH were back to normal. Once we do an ACTH stimulation test, which shows specifically if your adrenal glands can respond when stressed.

I'm sorry if you know all this or have discussed all this. Just wanted to clarify that we were told that there are two kinds of tests that my daughter would have to have, before they say her adrenal glands had fully recovered.

The other option might be some kind of autoimmune muscle inflammation that typically causes weakness - some kind of myositis possibly? It may be worth seeing a rheumatologist.
12-06-2018, 05:32 PM   #12
Honey
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Hi Maya 234,
I have had both. I spent the whole morning in a hospital ward as they took bloods every hour , after being injected with a drug, whose name I cannot remember. I await a letter from my Consultant, but it looks like he is waiting to speak to me in January. I know Cortisol levels were normal as I had a phone call to tell me so. My Gastroenterologist , whom I saw afterwards re Crohns, said I was suffering from coming off Steroids. He said it said nothing that tests of Cortisol levels were o.k. as I could still be unwell. Thank you again for your advice, You have helped. I look well but I am not. My strength is down but I do what I can, making Christmas cards just now, then rest!
02-01-2019, 05:43 PM   #13
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Hi there, it has taken 6 months but I am pleased to find my strength is returning. I can walk further and stay on my feet for longer. I still tire, not able to do Tai Chi yet, but am delighted to find some improvement. Coming off Steroids certainly caused me problems. I see my Endocrinologist Specialist doctor in a few weeks time and will discuss this with him. I know it was suggested I might have to go on a low doze of Steroid as I was symptomatic, but it looks as if I am on the mend. Thank you for your advice.
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