how did you get out of "bedridden level" ??(even if you are still sick)

[ahimsa]

after all your helpful advice I have decided to give florinef a try. ...

so with that said I have a few questions for those on or who were on florinef -
-what dose?
-how often and what time of day?
-did you supplement with salt, and or other electrolytes while on the florinef?
-did u have stomach upset? how did you deal with this?
-did you monitor with blood tests?
-side effects or pitfalls? anything I should look out for?

Everyone is so different that it's hard to give specifics. For example, a couple people have posted that they had bad side effects from florinef. But I never had any bad side effects at all (some weight gain, between 5-10 pounds, which partly left when I reduced the dosage again).

The other thing is that your symptoms are different from mine to begin with. Just as one example, you mentioned anxiety. This seems to be more common among ME/CFS patients than I thought. I never even knew it was a common symptom because I don't get it. But since I've been reading the Phoenix Rising forums for a while I've seen that it is more common than I thought.

So take my input with a grain of salt (Pun intended).

All the info that @SOC posted looked good to me. You definitely should take some extra salt, water, and potassium in whatever form(s) work for you. I use salt tablets, prescription potassium, and a homemade electrolyte mixture.

The only other recommendation I can think of to add is start out slowly. Instead of starting out with a full tablet (0.1 mg of fludrocortisone) once a day you might want to start out with either 1/2 or a 1/4 tablet once a day (need to get a tablet cutter). And then stay on that dosage for a few days, or maybe a week, to see how you do before increasing to the next highest dosage.

This may be more important if you are sensitive to drugs and/or if you are small in stature. I'm not so sensitive but I still like to start out small and increase slowly.

My doctor does a blood test for electrolyte levels (sodium, potassium, etc.) once per year. I'm not sure how useful that test is since it seems like those levels would fluctuate a lot. But I guess it's at least a spot check to see that things are not completely out of whack.

Hope this helps.

 

[Grigor]

I'm now on the second day and my side effects are horrible. I feel more exhausted. Spaced out then ever. Blegh . So mostly in bed.
How long these side effects will last??

I'm on 1/8 of a 0.1 dosage.

 

[SOC]

I'm now on the second day and my side effects are horrible. I feel more exhausted. Spaced out then ever. Blegh . So mostly in bed.
How long these side effects will last??

I'm on 1/8 of a 0.1 dosage.

I can't help you there. Neither my daughter, nor I, have had any side effects from Florinef. We both started at the 0.1 mg dose. I can say that the Florinef didn't do much good until I had a med for tachycardia as well. The combination is much better than either one alone.

What does your resting pulse pressure (systolic minus diastolic) look like? How about your resting heart rate?

 

[Grigor]

My heart rate while lying down is 109 72 with P 59

Just measured it But I react awful to any meds. That's also what makes it so hard to deal with. I barely can go through any treatments because I get such a hard kick

 

[SOC]

My heart rate while lying down is 109 72 with P 59

Just measured it But I react awful to any meds. That's also what makes it so hard to deal with. I barely can go through any treatments because I get such a hard kick

That's a pretty low BP, but that may be because you were lying down. Nice HR, though. You can try checking your BP and HR sitting up (after 10 mins) and standing.

You are not alone in reacting poorly to all meds. I'm lucky not to have that problem, but many PWME do. That makes it doubly hard to find ways to improve your condition.

 

[Grigor]

Yeah sitting up is not really an option at the moment. Ugh. Third day of total crap.
So annoying that I react like this to everything.
I always need to stop because of the crazy side effects.
Mostly is linked to the gut though

 

[Marky90]

That's a pretty low BP, but that may be because you were lying down. Nice HR, though. You can try checking your BP and HR sitting up (after 10 mins) and standing.

You are not alone in reacting poorly to all meds. I'm lucky not to have that problem, but many PWME do. That makes it doubly hard to find ways to improve your condition.

Its a perfect BP!

 

[SOC]

Its a perfect BP!

Yeah, okay, maybe for lying down. It's certainly better than a lot of us who have systolic BP in the 90s.

 

[Wayne]

so my question is what did you do that helped you get out of bed???

Hi Alice111,

The two things that did the most for me to get myself out of bed were daily coffee enemas and low-dose hydrocortisone (20 mg/day of Cortef).

 

[Gingergrrl]

I've had progressively worsening ME/CFS for more than 17 years now. Over the past year or so I had an accelerated decline and was steadily heading toward a mostly bedridden state. But I started taking cimetidine a few weeks ago (only 50mg every 12 hours, about 1 hour after eating) and it's quickly reversed some of that more recent decline, so that I'm getting back to a more moderate level of disability (still mostly housebound).

@nandixon Sorry if you already explained this elsewhere but what were your core symptoms prior to trying Tagamet that it relieved? I know we are all different in that regard and would love to learn more about the specifics of how it helped you if you are comfortable sharing. Thanks in advance!

 

[nandixon]

@Gingergrrl, My primary symptoms are:

1. Continuous fatigue and exhaustion.
2. Generalized muscle weakness and muscle fatiguability, especially in my arms.
3. PEM in the form of a severe exacerbation of #'s 1 & 2 above that occurs in a delayed* manner after the exertion. (*2-3 days later for many years, but within hours as the disease became more severe the last 2 years)
4. A type of orthostatic intolerance that seems mostly related to very low aldosterone, which Florinef and electrolytes help with fairly effectively.
5. Severe problems entering into the deep sleep/slow wave sleep stages.
6. Migraines (mostly controlled through dietary avoidance).
7. Lots of other more minor (relatively speaking) ME/CFS problems like IBS (diarrheal), food intolerances (dairy, nightshades), allergies (hayfever primarily), gastritis, tachycardias, etc.

The cimetidine (Tagamet) significantly reduces #'s 1, 2 and especially 3 above, but doesn't seem to affect the other problems.

Prior to the cimetidine I was slipping more and more into a bedridden (severe) state of the disease - which was essentially a continuous form of "PEM."

The cimetidine has taken me from 5-10% of normal to about 20%. So easily a 100% improvement but still mostly housebound and unable to work. It's worked continuously now for more than a month.