After having GI problems with Plaquenil and nausea/headaches with Imuran, my rheumatologist has advised me to stay off both medications. I messaged my pulmonologist about ongoing shortness of breath and pressure in chest, and he advised me to stop the Alvesco!! After having SO many medications thrown at me for the past year+, suddenly I'm being pulled off of everything!
How did I go from needing to be on all of these medications to not needing any of them??
I am so conflicted by this latest turn. It's depressing to know nothing is going to get better on its own and I've lost the hope that some medication will help me, but obviously, I can't stay on something that's making me sick(er) ...
Maybe I need to reconsider that Venus Williams diet thing... ::)
well that certainly does throw a kink into everything! I often wonder how that happens too...you get medicine and then blook, it's no longer needed...sometimes i think it could be some answered pray.
But if they are not helping and in fact or hurting you are better off without.. I know i have had a few times I went off from just not getting help.
What did your Pulmo suggest??? ~sass~
Sass, for right now, he said to just use the albuterol as needed and go to the ER if shortness of breath or chest pain worsens... so helpful!!
Awww :( I know, this is totally the awful conundrum we're all in.
I do think the available meds we have are...what's the expression --- six of one, half dozen of the other...? Unfortunately, most of them are like throwing a bomb when all you need is a firecracker.
That said, have you discussed methotrexate as an option? What about cellcept? Those are obviously the next two on the list.
Otherwise, there are many, many natural supplements that have been studied and shown to alleviate inflammation. Granted, many are animal studies, but that's how a lot of this stuff is unfortunately. Anyway, here's several that I am trying now (with studies posted next to them):
1. Turmeric: http://www.ncbi.nlm.nih.gov/pubmed/17569223
2. Sulphoraphane: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746920/
3. Honokiol: http://www.ncbi.nlm.nih.gov/pubmed/17617564
4. ECGC (Green Tea): http://www.ncbi.nlm.nih.gov/pubmed/17364504 (I don't take this as a supplement...just try to drink it often)
I think the combo of these plus fish oil and krill oil have been helping keep things mostly in "check". Granted, I am also on plaquenil, so as you know - it's tough to sort out what of the things i'm doing are really helping.
One other thing that I KNOW definitely -- without a doubt helps me -- is exercising. In fact, I would say of all that I do - it has the most dramatic impact on the way I feel mentally, physically, etc. Mind you, it is NOT easy dragging my tired, stressed, sad body out the door. Plus, I have the breathing issues many of us do. BUT, I feel like a new person when I can get a decent workout session in. I've been running 3-4 miles a day several times a week, alternating with other cardio like elliptical, stationary bike, walking, etc. My body doesn't always allow it, but I do what it lets me. Oddly enough, I feel my breathing improves when I get exercise and is worse when at rest. (this is a whole 'nother story).
And a final parting note - I just came across an extremely interesting article regarding stress and autoimmune disease (specifically MS). Basically they studied a cohort of MS patients, and enrolled half of them in a stress management program, and left the other half as controls. At the end of the study, 77% of the patients in the stress managment program had no new lesions, versus only 55% of the control group. The article summarizes it by saying that the stress management effect was the equivalent of a phase II drug study in terms of preventing new brain lesions in MS patients. Here's the article: http://www.ncbi.nlm.nih.gov/pubmed/17364504
This one really blew me away. We all talk about how stress sends us right into a flare...well - here's proof that controlling our stress can help control our autoimmune activity. NOW...I just wish I had a magic wand to alleviate one (or all) of the many stressors in my life!!!
Anyway, I hope this all helps give you some possible alternatives to th.ink about Of course, run supplements by your doc as you would anything else, yada yada- you know the drill!!! But it's worth looking into, at the very least!!
Crap - posted the wrong link for the Stress/MS article. Here's the right one:
http://psychcentral.com/news/2012/07/15/stress-management-prevents-brain-lesions-in-multiple-sclerosis/41683.html
Thank you so much! Methotrexate isn't an option for me because of my breathing issues; my rheumy has already told me we won't be going that route. I'll do some reading on those supplements you listed and you're right - I need to start playing tennis again. I'm sure it can only help!
Thanks again for the great advice!
ms, Please do not panic at this time. I can understand the reasoning behind this lates move on the doctors part. When a person starts on many new meds it can be very confusing to know which med is causing what.
Although he didn't say anything at this time I would guess that he is waiting to see how you respond without these drugs. He may then choose to restart one of them and not start the other two. When a new med is started it can often take a long time for the side effects and the desired effects to occur. Imagine his confusion, as well as your own, when you are having all these symptoms.
It could be that you will have some of these symptoms even after stopping the drugs. Sometimes we have new autoimmune symptoms that can be thought to be drug side effects. Also, I would investigate the dosing schedule if you ever go back on these drugs. Sometimes a new dosing schedule changes the way a person reacts to a drug.
It might be worth your while to research circadian rhythms relating to medication metabolism. Hope that you are feeling better and don't have any emergencies. Irish
Sorry to hear of your troubles. I wonder about my plaquenil causing my gut issues. I agree with controlling your stress, possible supplements and playing the waiting game to see how your body reacts. I am going to my gastro this Thursday and believe it or not, he has Mixed connective tissue disease and does not take plaquenil because of side effects. He works from sun up to sun down and doesn't seem to be bothered by his condition. I plan on asking him how he does it. We all need that boost once in a while. I am not sure if diet and exercise helps my situation any but it is one thing that I am in control of and I will just do about anything to keep my spirits up and to keep from getting worse.
Winnie :)
WoW! Irish, I know you've had a long hard time with all of this, but I must say...post after post, response after response...
You are just so wise. Whatever you've gone through, however bad you have felt, you have become a fountain of knowledge for the rest of us. You are really helping a LOT of people here.
Thank you.
Thank you, Irish - taking a deep breath (well, as much as I can) and calming down now! That does make sense.
Winnie, since quitting Plaquenil, my diarrhea has stopped (and now I get constipated and have to take stool softeners - go figure!) and I've gained a few needed pounds (probably water weight), but I do feel much better off of it than I did while I was on it. Oddly enough, I think the Plaquenil was making my fatigue worse too. My joints are starting to hurt again, but for now, I'll take the Rx NSAIDs when needed for the joint pain and swelling.
That's great Mshistory. Remember what Joe says, breathe calm. Enjoy every bit of peace God offers you.