Shortness of breath may require prompt action
Posted , 10 users are following.
What I have recently learned may be useful to some PMR victims who experience shortness of breath on exertion.
I am an almost 82 yr male who has maintained a high fitness level until PMR - diagnosed last August but almost certainly affected as early as the previous August. A typical beginning medrol dosage of 16mg/day brought immediate miraculous relief. My aerobic capability returned completely.
As I began to reduce dosage, I noticed in retrospect a reduction in aerobic "fitness" as some stiffness of my back also increased. Because the stiffness increased but was still tolerable I paid inadequate attention to the aerobic change. As I reduced dosage further (last low dosage was 3.5mg/day) there was drastic shortness of breath with little exertion. It was not acceptable.
I did considerable online research and found a small number of medical papers noting an association of interstitial lung disorder with PMR. I increased my medrol to 12mg/day and noticed a change in aerobic capability almost as dramatic as the initial (miraculous) relief of PMR on first starting medrol.
Had I not increased medrol I am firmly convinced that my lungs would have suffered irreversible damage.
I believe that anyone suffering from PMR should pay close attention to aerobic capability as they try to wean from medrol. While lower doses of medrol may lower the risks associated corticosteroids they may endanger the lungs. For those noticing aerobic insufficiency I suggest serious consultation with their physicians. But it may be necessary to make your own decisions. In my case two rheumatologists told me there was no relation of shortness of breath to PMR or medrol.
PS, I walked today at a rate of 12min40sec to the mile with no distress whatsoever. And I have been down to 10.5mg/day for 10 days.
0 likes, 21 replies
alward philoso4
Posted
After diagnosis, he started out at 60 mg because of the CGA and was tapering quickly. By May he was down to 15, but started to experience vision issues, and they jacked it back up to 60 and have been yoyo'ing ever since. He's now on leflunomide as well to help with the tapering. After coming off the high of the initial treatment, he started to experience extreme exhaustion and shortness of breath upon even little exertion. After lots of lung tests he is now waiting for his pulmonology apt at the end of July. In the meantime at his rheumatology apt earlier this month the doc in passing mentioned that he has "a component of pulmonary fibrosis" but that' he'd have to talk to the pulmonologist about it. Really! Drop that bomb and then say nothing else? I'm flabergasted. Dad doesn't know what that means, but I know what that means and I'm totally freaked out about it.
I know it could be just a weird cooncidence in timing... but like you I have read the articles you refer to and I feel like there must be a connection between the PMR/CGA and PF.
I would lo love any advice you have about getting back to normal, or close to normal, functioning. Holistic approaches, food, etc.
Thanks in advance.
philoso4 alward
Posted
Anything that I pass along in the forums is purely my opinion from googling a lot of medical publications. So be warned.
I am now basing my level of medication on nothing more than my opinion. I am now at 10mg medrol per day and have almost NO back pains. I have never had any of the GCA symptoms - thank God or someone or something. As well as being pain free I can exert myself at a very high level without shortness of breath. The only downside I'm experiencing to the medrol is that I get lots and lots of very dark patches on my arms and legs which I assume to be bruises.
My overall lifestyle is that I eat a very balanced diet (thanks to my wife) which is sparse in red meat. I am very active. I take no other medications. (Stopped taking statins a few months ago.)
I have been on 10mg long enough that I believe I can try dropping to 9mg which I will do very soon. If anything develops I will post what it is.
Again, I am so sympathetic to your dad's plight. And there are probably others who are dealing with his issues more than I. Hope you find some help.
alward philoso4
Posted
He's a year out now and he's stuck at 30 mg. Every time he goes lower, his eyes are affected. Of course the docs only try dropping him 10 at a time. They've never tried, dropping it slower. He's so bloated and swollen, he can hardly walk. I'm so frustrated with the situation.
I definitely think the GCA makes this so much worse.
EileenH alward
Posted
alward EileenH
Posted
That's what I think too Eileen. But I can't get him into another rheumy until Dec. It's so aggrivating.
Anhaga alward
Posted
Would he be able to do the drop but in smaller steps? I suppose the doctors want him to stay at the new level for several weeks? Well, take that time and drop by smaller amounts, staying at each level for as long as can be managed in the time he's allotted. It still won't be ideal but it may make the reactions less severe. So if it's one month, drop by 2.5 per week, maybe even alternating with the old dose - 30/27.5 - for a couple of days, then in the second week alternating with 27.5/25, then 25/22.5, finally 22.5/20. Hope I got my math right. Of course if he's got more time, and I sincerely hope the doctors would allow more time at the 20 mg level, then the taper could be made slower because the slower the better. The aim would be to get him as close as possible to what the doctor wants in the time, but not by dropping the full 10 mg overnight. The thing is, by getting the dose lower his pred side effects should ease, but doing it too fast causes all sorts of other problems related to pred withdrawal. I don't know why the doctors don't understand that. Good luck!