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Corticosteroids: Withdrawal


LindaJoy
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Hi, everyone. Quick question. Weaning my steroids. Having tachycardia. Is that "normal" with steroid-withdrawal? I have a lot of other symptoms that I can find in my research of what to expect with steroid withdrawal (abdominal pain, headache, tremor), but I can't find tach, and I'm in it, alot, today, with palpitations. Wondering if I can contribute this to the steroid withdrawal. What's weird is, it starts in the most when I drink water.

Thanks in advance,

Lindajoy

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Hi Linda,

the two summers that I took long term prednisolone for hayfever I had a hard time weaning. Tachycardia was one of my withdrawal symptoms and it seemed to me that my POTS flared each time I reduced the dose. Because of the symtoms I weaned super-slowly. I cut back from 10mg to 7.5mg then by 0.5mg per week (sometimes waiting 2 weeks). I did this by taking 7.5mg daily for 1 week, then 7.5mg and 7mg alt days for a week, then 7mg daily for a week, then 7mg and 6mg alt days for a week, 6mg daily etc....

If you are on much higher doses of pred the initial reduction can usually be a bit quicker (I went 20mg to 15mg to 10mg without too many symptoms).

It was my POTS flares on withdrawal of steroids that got me thinking that I might possibly have MCAD. Unfortunately my UK immunologist doesn't believe that MCAD exists so won't test me for it (it took me 7 years to get a referral to the only immunologist covering a large part of the UK so seeing someone else isn't really a possibility).

Flop

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Thanks, Flop, for the response. What is the connection between MCAD and your POTS flares when coming down from steroids, if I might ask? I've never heard of a relationship between these two (heck, I'd never heard of steroid withdrawal syndrome until today, and I've been experiencing it for years), and I have MCAD.

I'm sorry your luck with the immunologist was lousy. That stinks.

Take care and I hope this finds you doing well.

Lindajoy

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Hi Linda,

I only found out about MCAD on this forum but a lot of the symptoms seemed to fit mine. I am on all-year-round antihistamines (H1 and H2), Singulair and nasal steroid spray for allergies. I have oral allergy syndrome in response to eating several different types of fruit. I am atopic having had problems with both eczema and asthma in the past but they are not troublesome at the moment. What doesn't fit with standard allergies is that I have had episodes or feeling baking hot, sweating, oral swelling, hives, tachycardia and low BP (anaphylaxis??) with no apparent trigger, and that my IgE levels are low (with my allergies you would expect me to have sky high IgE).

I always thought there was a link between my hayfever and POTS as whenever my hayfever is bad my POTS is bad too - itching and sneezing go hand in hand with tachycardia and dizziness for me. My thought was that histamine was causing vasodilation (came up with this thought independantly about 4 years ago but was scoffed at by my doctors).

When weaning off the pred (even slowly) I found that I had 3 days where I was more tachycardic and dizzy than normal (shorter time tolerated standing up eg 2 mins instead of 10 mins before vision going black). Then my POTS symptoms would settle back to normal, the next week I would have the same increase in POTS symptoms for the first few days again.

I don't know if any of this correlates with what you know about MCAD and POTS?

Flop

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Hey Flop & Linda Joy-

Interesting thread. I always have a hard time coming off steroids. I just feel HORRIBLE- like I have the flu and will die any second. Doing it slowly is best for me...I know you are doing that, Linda Joy. In another thread I recommended adding a low dose of doxepin in the evening while you are going through this process. It is a potent anti-histamine that many MCADer's use during rough times. It was originally an old-timey anti-depressant. It knocks me out and ultra relaxes me. I still think it'll make the withdrawal process easier for you. It is also a powerful appetite stimulant- which would be good for you too.

BTW, Flop- I have low IgE and am allergic to nothing and still have hives, excema, anphylaxis, persistant runny nose, post nasal drip, throat & chest tightness. That doesn't rule out MCAD. For some strange reason, I have really low IgG....apparently not linked to MCAD. So sorry your immunologist there isn't helpful. :) That really breaks my heart. I think I've mentioned Professor Molderings in Germany. (Can't think of his first name off-hand.) He's a huge advocate for MCAD patients in Europe.

Hugs-

Julie

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I've having a terrible time coming off prednisone. Dropped from 60 to 40, to 30 to 20 decently. But coudln't drop below 20. It's taken me a year - yes a YEAR - to go to 17.5mg. I drop .5mg at a time and I still get flares...

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Hi Julie,

just to clarify my statement about IgE:

In most people with allergy (eg positive skin prick tests or high specific IgE) their total IgE is also very high (the worse the allergies the higher the IgE often!)

In most people with MCAD they don't have true allergies - all the symptoms suggest allergy but allergy testing is negative and their IgE is usually low.

It is possible to have both allergy and MCAD together.

We know that I do have true allergies (specific IgE only elevated a bit but positive skin prick testing) so you would expect for my severity of symptoms that my IgE would be very high too. However my IgE is at the bottom of the normal range (makes doctors think that my allergies are only mild or that I am making up my symptoms!!!). I suspect that I am weird as usual and have both true allergy and MCAD (totally dependent on antihistamines even in the winter).

I wish I could get to see a doctor like Dr Castells or even have a doctor run the tests that she recommends. My immunologist was "yeah, I've heard people use the term MCAD but there is no such thing". He did run some tests last time I saw him in clinic:

serum tryptase

total IgE

Allergen specific IgE

Pru p3

Pru p1

co5-gliadin

The serum tryptase was to rule out mastocytosis (which he does recognise). The last three were because he got excited when I mentioned that I have had "allergic" reactions after exercising. Apparently some people react to gluten but only if they eat wheat and then exercise a few hours later. The tests were done in early March but I don't have the results (in the UK we don't normally get given copies of results) so they were probably normal with the IgE ones being the same as last time he measured them. I did give him a print out of an article about MCAD as a cause of POTS and he seemed interested (asked if he could keep it to read) but I don't have another appointment scheduled to ask him any more. I just go to the nurse allergy clinic for desensitisation injections every week.

Thanks for the link to the German Dr but unless my immunologist were to refer me I can't see anyone else :blink:. If I had the money I'd fly to the US and see Dr Castells.

Flop

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  • 2 years later...

Flop

I was put on steroids for anaphylaxis and had ongoing allergy symptoms requiring a slow taper then had issues at low doses due to symptoms of adrenal insufficiency and tachycardia. Now I fit the POTS criteria and its one of the most disabling parts of everything that's going on. I'm wondering if this could be a transient phenomenon of steroid withdrawl. I'm on hydrocortisone at 30 mg and tapering 5 mg every 2 weeks (HC is 1/4 as potent as prednisone so it's roughly 7.5 mg of prednisone). I'm also MCAD vs mastocytosis so who really knows. I just REALLY hope I can get off steroids but I'm scared the POTS will flare.

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I am just trying to start hydrocortisone (cortef) and not doing very well with it. We started DDAVP at roughly the same time, though, so which is the trigger I don't know. But having terrible migraines, and my BP skyrocketed so much that we actually discontinued the DDAVP last night. Still trying the hydrocortisone, 20mg a day, but who knows if it is going to work out either. But I don't have MCAD, so maybe this all works differently for me?

Sandy

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I had the worst time getting of prednisone. It took me months to get off of it I had to drop .05 mg and it would take more than a week to do that. I was only suppose to be on it for 5 days.. took me almost 5 months and in that time I also went into adrenial failure, then adrenial crisis and had to be given shots twice to stop it. Once I got down to about 15 mg I was having sores all over my mouth and on my hands. Tachycardia, tremors, confusion, studdering, twitches etc were all my syptoms coming off

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Oh my gosh tarastomsgirl that sounds horrible! But interestng to hear someone else had so much trouble. I've switched to hydrocortisone. Was your tachycardia worse with standing etc because I now fit POTS criteria but they're not sure steroids are making it better/worse.

I am also on an inhaled steroid but just weaned off and had a hard time with that which is only 200 micrograms a tiny tiny amount which makes me wonder if i'll ever handle the 5 mg hydrocortisone (just over 1 mg prednisone equivalent) drops.

Are you off now? Do you feel okay? Was the crisis after you went off steroids? Hope you're doing well

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