Mcad Or Florinef Sensitivity?

[jenwic]

I have posted about this before, but I wanted some more opinions. I know everyone is not on here everyday. I take Florinef and have for 4 years. I decided to stop taking it because my blood pressure was rising. My pharmacist said I could just stop taking it. I didn't take my p.m. dose and in the middle of the night, I woke with horrible tachycardia, pounding heart, dizziness, tremors, horrible adrenaline rushes that wouldn't stop. Went to my cardiologist the next morning with blood pressure 160 over something and all the symptoms above. I felt horrible for over a week, even after trying to resume the florinef. I did change the dose from a whole pill in the a.m. and a whole pill in the p.m. to a half in the a.m. and whole in p.m.

Now, if I am even a few minutes late taking the florinef, my heart races, adrenaline rushes, feel bad for hours. I have to take the pill on an empty stomach because if I eat with it, that delays the medication from getting into my system a little and the horrible symptoms start. As a result, I can't eat from 7:30 a.m. to 11:30 a.m. (I take the pill at 9:30) and at night I can't eat between the hours of 6:45 and ? (I don't eat until breakfast) and I take the p.m. dose at 9:30. This is getting very old. The pill also makes me feel sort of sick because I'm taking it on an empty stomach.

Someone on here posted that maybe the florinef was treating some other condition (like MCAD) and that is why I'm so sensitive to it. I do have bad allergies and asthma. When I took allergy shots about 5 years ago, I was hypersensitive to the shots. They had to dilute the solution to 1/100,000 strength and I was still having huge wheals of reaction 2-3 inches across. My allergist said. "I don't understand how you could be having any reaction. This is like I'm giving you water."

I am also very sensitive to meds especially antibiotics. I can only take a very few. My heart will race, adrenaline rushes, short of breath. I had a bad case of hives 2 days after I finished a 10 day course of pennicillin. Those are the only hives I've had.

I do flush if I get very nervous or excited, but this doesn't happen often.

Can anyone throw any ideas my way? I'd welcome your thoughts.

[jenwic]

I forgot to mention that I also use Pulmicort inhaler (an inhaled steroid) every day. I missed a puff one day and had a very similar, but slightly milder, reaction.

[erik]

I'm sure there are multiple possibilities but do keep in mind that taking corticosteroids makes the body produce less of them itself. Perhaps your symptoms are from adrenal fatigue due to the steroid treatment???

The general steroid rule is that short term use does not induce adrenal fatigue. Not sure, but I think that means durations like "a month" or so... but an expert might pin that down better. You are clearly beyond "short term".

For fludrocortisone by itself, "the literature" that I came across is that short or long term use below 0.4mg daily "has not been found" to induce adrenal fatigue. This is perhaps why a doc wouldn't tend to worry here... since research indicates not to worry in this way about stopping fludro.

Fludrocortisone is synthetic steroid with potent glucocorticoid as well as mineralcorticoid properties. We tend to use it for it's mineralcorticoid (salt/water retention) effect... but the other factor is there too (just minimal because of the low doses). I don't know, but maybe the concurrent use of the other steroid changes the whole picture. It seems like it might. One simple way to look at this is that you might have "drug induced Addison's" at this point which is part of the game, with medical steroid use. If that is the case (and I don't know how to know for sure or what else might be better explanation)... then slow weaning off is involved (meaning up to years).

[jenwic]

I had considered that this could be an adrenal fatigue issue, but my dr. said florinef is not that kind of steroid. He is very puzzled as to what is causing this reaction. As a matter of fact, I am rather disgusted with him right now. He said there is nothing else he can do for me. He suggested I go to Dr. Grubb, but with my extreme medication intolerance, I don't see what the point is.

I wonder if you could be right, though. I think I'll do some research on adrenal fatigue and see if it sounds familiar.

Thanks for your reply!

[juliegee]

Hi jenwic-

My best guess is that the florinef is possibly treating unDXed MCAD. You seem to have evidence that your mast cells are quite reactive.

What other meds do you take for your known allergies, asthma besides the inhaler? I take zyrtec, singulair, and ranitidine in the AM and atarax in the PM. That keeps these symptoms, similar to what you describe, at bay

If this theory is true, once you start treating the MCAD you should be able to wean off of the florinef.

If you are already on H-1's, H-2's, and an anti-leuketreine....it kind of blows the theory. Unless you also need a mast cell stabilizer, like gastrocrom.

With your doctor's approval, I'd try to add the MCAD med regimen, and THEN try to slowly wean off of the florinef in baby steps.

BTW, with such a high dose of florinef at night- HOW do you sleep?

Julie

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[jenwic]

I tried Singulair more than once, but it's a med I simply cannot tolerate. I have the fast pounding heartrate and tremors with it. I did take accolate, which is similar, for a few months. My current allergist won't put me on it because she fears it might damage my liver ( I should have asked why, but didn't).

I can't use albuterol because it makes my heart race. If my allergies get really bad (which doesn't happen much after the allergy shots) I take Benadryl. I also use Rhinocort Aqua, which is a steroid nasal spray, to control nasal allergies.

When I first started taking Florinef, my dr. started me on a whole pill in a.m. and another whole pill in p.m. I do have a lot of trouble sleeping. My dr. suggested switching the dose I take now (1/2 in a.m. and 1 whole in p.m.), but with my sensitivity to the florinef I can't hardly do that.

The Florinef doesn't seem to have helped me much compared to before I took it, except in the early morning. I wish I'd never started taking it.

I know I need to start weaning off it, I am just terrified to try, to be honest. When I go for any dr. appt. I get all stressed out because I know my bp will be up and they will tell me I need to stop the florinef.

[juliegee]

Forget the singulair. Have you tried zyrtec or zantac (ranitidine)? They are OTC, and very benign. A very few have difficulty with sleepiness when taking zyrtec.

I wonder if you took those (thereby treating over-active mast cells), if your dependency on florinef would lessen?

As far as sleeping....if there's any way that you could switch your .1mg dose to AM and your smaller dose to PM- that would help. Maybe take the zyrtec & zantac at night when you try this would smooth that transition.

Be sure to run these ideas by a supportive doc before trying!

Best of luck-

Julie

[jenwic]

Thanks for the ideas. I took zyrtec many years ago when it was prescription. What does the zantac do?

[juliegee]

Zantac or ranitidine is an H-2, a type of antihistamine surprisingly. It helps to suppress over-active mast cells. Out of curiosity, do you have trouble with acid reflux? It also treats that.

Best of Luck-

Julie

[jenwic]

No, I don't have that problem. I wonder if an H-2 would be necessary for me since I don't have acid reflux.

[juliegee]

It's the combination of H-1 (zyrtec, claritin, allegra, benadryl) and H-2 (zantac, ranitidine) that supress the effects of over-active mast cells.

My son is on an MCAD regimen. He does have sever acid reflux, but he takes nexium for that. His docs have him on claritin for an (H-1) and they still insist on ranitidine/150mg for an (H-2.)

Talk with your doc before starting.

Julie