Prednisone (for sarcoidosis), any thoughts?

[AnnaS]

My DH, Mr.S, has finally (after two surgical procedures) gotten a definite diagnosis for his lung problem. It is sarcoidosis, stage 3. We are told the cause of this is unknown but may be from a toxic exposure at some point. He is 54 yrs old, a good McDougaller, 6 years, no cheating.

The pulmonary specialist says that this condition responds well to prednisone in 80% of cases. So, he will soon be starting a course of this steroid and will need to take it for 9 months, she says. We have been warned about all kinds of dire side effects.

My questions to any McDougallers who have had to take prednisone--did you find that you gained weight, in spite of sticking to the McD plan? Or is the threat of weight gain mostly a SAD thing? What about gastro disturbances? Did you get any caused by the steroid? I am kind of uncomfortable with the doctor's recommendation that Mr.S should start taking Prilosec in order to prevent ulcers. Is this really necessary or recommended? She is a very experienced doctor but I doubt if she's had any McDougalling patients. She also wants him to take Ambien (at least a half-dose) to prevent sleep disturbance from the prednisone. Again, any experience with this? He tends to wake up at night anyway...but wouldn't it be better to wait and see what happens before taking this drug?

The doctor also wanted him to start taking calcium (to prevent osteoporosis from the steroid) but Mr.S turned that down flatly as soon as she mentioned it, and she backed off.

Our regular doctor, who's a fairly commonsense guy, will meet with him soon to go over all of this treatment and hopefully give us some input on these questions too. He already suggested Mr.S get a baseline bone scan so that the bone loss issue could be monitored. We decided that was a reasonable enough suggestion, though we aren't concerned about bone loss as we are confident that our diet and some increased weight bearing exercise will help.

Okay, sorry to drone on so long but I would be interested in any input. Thanks!

[Burgess]

I have used what appears to be prednisone (prednisolone acetate opthalmic suspension, aka "Pred Forte," 1%) for iritis, but only in the form of drops in the inflammed eye. I had no side-effects from that, but of course oral use must be much more serious.

My eye doctor, for whom I have a lot of respect, always designed an "exit strategy" when he gave me the prescription. The treatment started with a strong dose and then stepped down over a period of two or more weeks. The inflammation usually greatly diminished within 48 hours, but the stepping down process still had to continue to prevent a bounce-back.

I realize your husband's situation is different, and perhaps prednisone is not the same as what I took, but you might inquire now into the need, if any, for weaning away from the medication.

P. S. -- My doctor and I discovered that the generic form of the prednisone he prescribed did not work. (The pharmacist made the substitution, perhaps with my assent, but I don't remember.) It reduced the inflammation by only about 10% and then made no progress. When my doctor saw that, he broke open a sealed surgical case and gave me a bottle of the original, not the generic, medication. It worked 100% within 24 hours.

The lesson is that the "delivery system" of a generic drug may not be the same as the delivery system of the original, even though the drugs themselves may be identical. That is what my doctor told me. Now, I usually go with the original. I am willing to pay the extra price.

I mention these points only as something to be aware of. They may not apply to anyone reading this thread.

[Melinda]

I would PM Dr. McDougall about the calcium - to my knowledge, prednisone does indeed cause osteo.

[AnnaS]

Thanks for your comments, Burgess! We do know about the step-down process for this drug, and it's already in the plan. He will be taking a large dose for the first month, then a maintenance dose for a few months, then it will taper down. Once a month he will have to get a chest Xray to see how it's going.

I'm glad you brought up the question about generics--that is something else he can ask his doctor about next week. We have already purchased the medicine (though he can't start taking it until after his last checkup with the surgeon). I can't tell from looking at it whether it's a generic or not, but he will take the bottle along with him and ask the doctor about it. The Ambien and the Prilosec though are both generics--he can ask about these, too.

He has already decided he doesn't like Ambien, which he tried out this week to see what effects it might have. For three nights it did help him sleep better, then when he didn't take it the fourth night he was very agitated and couldn't sleep. Ugh, I hope it won't be necessary for him to take this.

By the way, this mysterious disease does show up in other organs--we have a friend who has it in his kidneys, and we heard that it also occurs in the eyes, so it might be the same or similar condition to yours. Anyway, very encouraging to hear about your rapid and complete recovery!

[seestorcoo]

Steroids cause your blood sugar to rise, sometimes rather dramatically. If your husband is diabetic, (probably not if faithful McDougaller), make sure he expects some diabetic medication adjustment. Steroids also increase the appetite - both of these can help increase weight. If he is not going to be on it for a long period of time, I wouldn't worry about the weight gain too much - he can lose it again afterwards. Also, I can't emphasize enough to make sure not to stop the steroids abruptly. I've seen people die from that. Make sure that you fully wean. He may get a little puffy from the steroids. Other effects are mostly for long term users - cushings syndrome, steroid skin, etc.

Steroids can be magical things but they come with a price. As for sleep, Benadryl and trazadone are both nonnarcotic medications that are used for sleep.....

[KareninTN]

I have been on Prednisone 6-day packs on two different occasions, one that was necessary, and one that definitely wasn't. Yes, it made sleeping impossible; was like caffeine overload big time. It didn't cause weight gain in the short time I took it.

Wishing Mr S the best of luck.

Karen

[AnnaS]

seestercoo, thanks for this input. His blood sugar has never been a problem, even before McDougalling, so this may not be an issue for him, but we will certainly keep a close eye on it.

He won't be pleased to see any weight gain, but as you say he can lose it again later if so. Anyway, we will trend more toward MWL as much as possible for the duration of the treatment.

Thanks again for the warning about tapering off the prednisone--yikes, that sounds serious. I know his doctors (both the pulmonary specialist and the regular doctor) will be monitoring him carefully and I know there's a proper plan in place for taking him back off the steroid, but I will watch this like a hawk.
(I just read your comment to Mr.S and he said, "That's helpful." I think he needed somebody other than me to tell him not to worry about the weight gain! LOL)
Thanks!

[groundhoggpeggy]

AnnaS,

Sorry to hear he is having this problem. I remember reading that this condition in the lungs seems to be absent in the smoking population, and there are some university med depts. now doing research with the nicotine patch to alleviate this, with the hope of possibly proving that it might workout easier than current treatments... maybe he might be interested in participating in such a study;

http://clinicaltrials.gov/ct2/show/NCT00701207

Hope everything works out well and he's back to his old self very soon!

Peggy

[AnnaS]

I have been on Prednisone 6-day packs on two different occasions, one that was necessary, and one that definitely wasn't. Yes, it made sleeping impossible; was like caffeine overload big time. It didn't cause weight gain in the short time I took it.

Wishing Mr S the best of luck.

Karen

Uh-oh... the sleep problem could be a difficult issue. If it affects him that way. Well, as seestercoo pointed out, there are several drugs to try. . .
and maybe with time he'll adapt to it. Oh dear.

Appreciate the good wishes!
--A.

[AnnaS]

AnnaS,

Sorry to hear he is having this problem. I remember reading that this condition in the lungs seems to be absent in the smoking population, and there are some university med depts. now doing research with the nicotine patch to alleviate this, with the hope of possibly proving that it might workout easier than current treatments... maybe he might be interested in participating in such a study;

http://clinicaltrials.gov/ct2/show/NCT00701207

Hope everything works out well and he's back to his old self very soon!

Peggy

This idea got the thumbs down when I ran it past him... partly because of the problem of getting addicted to nicotine in the process. The other reason is that he's not in a position to experiment--his case is advanced enough that, if not treated would not reverse itself and would eventually kill him. Gulp. I think we'll go with the nasty steroid. Now, if a person were at an earlier stage of this, where there is still a chance that it might reverse itself anyway (this happens quite a lot, apparently), then why not experiment, I suppose.

[Donna R]

Anna, glad you will remember seestercoo's remarks about tapering off the prednisone.

I have family members who take it. (they are not Mcd eaters.) my diabetic aunt saw a big increase in blood sugar and the doc who prescribed the pred hadn't told her that would happen. he should have alerted her GP in the beginning and had her meds increased. as it was she had to start taking insulin shots. now she's tapering off but very slowly and her face is puffy.

I have a grandson who at age 9 had to take prednisone for a liver/bowel condition. his doc is cautious and uses it for short periods of time. at night he takes a melatonin tab. he does sleep, has never been a good sleeper so I dont know how much the pred does to him or how much the melatonin helps. his parents notice he's more moody when on the pred.

my step-father was on pred for many years for a skin condition. he took something to protect his stomach. his face got puffy. otherwise I don't know if it bothered him too much.

so the dire predictions may be true but I think some people can take it without as many bad side effects.

I hope Mr. S has good results!! keep us posted.

[hope101]

The steroids make sense to me, given his history. The Prilosec I would consider optional, although steroids are known to cause irritation to the lining of the stomach, and if your husband is on any other medications that could contribute to this, it's probably a reasonable idea. Even just his age means he is statistically more likely to develop an ulcer without them.

But, the Ambien, as a preventive medicine, makes no sense to me at all. Like any sleep aid, if taken long term, it can become habituating. What that means is that he'll go through withdrawl from it, even when he's no longer having sleep disturbance caused by the Predisone. Unfortunately, that process can last for weeks in some people. For that reason, I'd recommend that he reserve the Ambien and use on an as-needed basis, with as many days as he can manage in between doses. Hopefully, if he continues to exercise, avoid caffeine, and practice excellent sleep etiquette, he can avoid it altogether. In this case, though, I honestly think the least amount is the best.

I wish him all the best.

[groundhoggpeggy]

I wish him the very best in going through the treatment... hope he gets through it without much trouble at all and gets the healing going strong.

Wishing you both the best.

[AnnaS]

Donna R-- thanks for sharing those anecdotes. Also, I forgot about melatonin--that may be another sleep aid for him to try if it's needed.

hope101--thanks for the encouragement about the Prilosec. Although he doesn't take any other medications, he does sometimes get stomach upset and he sure wouldn't want to get an ulcer. He tried out the Ambien already and just hates it--that is, even after 3 days stopping it was horrible. He's going to discuss with the doctor what the options might be if he really needs a sleep aid, but will wait and see how the prednisone affects him. I agree that exercise will help--lately he has not been feeling well (I think run down from the lung ailment?) and hasn't been exercising enough, but if he starts feeling better and as spring arrives I hope we will get back into our walking & biking routine.

groundhoggpeggy--Thanks for the well wishes!

--Anna

[Lacey]

Sorry to hear he is having this problem. I remember reading that this condition in the lungs seems to be absent in the smoking population...

A member of my family was diagnosed with sarcoidosis in her lungs in her late 20s. She had been a heavy smoker for over ten years at that point. So it certainly wasn't true in her case.

AnnaS, I am very sorry to hear about your husband. When my family member was diagnosed she was put on prednisone amd yes, she had side effects like weight gain, a "moon face," and acne. I don't recall the stage of her illness but I do remember things seemed very grim and we were all worried about the outcome. She was weaned from the prednisone slowly. Her side effects went away. BUT the important thing was that she has had no recurrance of the sarcoidosis and she is now in her early 50s. I cannot get any more details from her as we no longer see each other but in her case it seems that the prednisone helped her. She continues to be a heavy smoker. She was very overweight when she was diagnosed and remains so as far as I know, but she did get quite slim for awhile after going off prednisone, so I believe it is certainly possible to lose weight after taking it. As much as I would hate the thought of going on long term prednisone treatment, given the seriousness of my realtive's illness and the really remarkable recovery she made using prednisone I would try it myself if I were dealing with sarcoidosis. Best of luck to your husband and please keep us posted.