Could I be too immunosupressed?

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crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/20/2013 11:32 AM (GMT -6)   
I've been on Methotrexate for over 5 years. Prior to that I was on Azathioprine for awhile. When my autoimmune symptoms started up, I was put on plaquenil and prednisone. I'm no longer on that , but have been put back on prednisone tapers on occasion.

How long can you stay on immunosupressants? I developed lung cancer and had my lower lobe of my right lung removed in August of 2012. Rheumy says methotrexate played no part in that. I now have pneumonia for the second time in 6 months and I was given a pneumonia vaccine in September. During a routine CT scan checking for cancer reccurrence, I was found to have a spot, this time on my left lung. In a couple of weeks I will have more CT scans seeing if the suspicious spot is cancer.

I know that autoimmune disease can do a number on our bodies, but I often wonder what the meds are doing to them too. As you can see by my signature, I have other crazy conditions...some that were diagnosed since my MCTD. I try to stay as positive and active as I can. In spite of all the craziness my life is still good and I do have a lot to be thankful for.

Wishing you all good days

hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/20/2013 1:30 PM (GMT -6)   
Sorry to hear about your problems, everything you've been through already, and everything your going through right now. I do believe that medications that are given cause other problems with their side effects. Seems like a vicious cycle and overwelming at times. Yet it's the price we pay for wanting to live as long as we can. I have learned over the years that I'm not taking every medication the doctors hand out to me. I try to reserch them as much as I can to make a formative decision on what I think will help or what I think won't help, because the final decision is mine. I have found through the years that the Pharmacist knows more about the medications then some of the doctors do. I've been in so many doctor offices that I see certain people come in with a lot of sample medications that their trying to sell for their company. I, in the past have been given some of those samples, like Lipitor and I believe there is a class action case against lipitor and I took that medication for years and developed diabetes while taking it. So who is to really know what these medications are doing to us in the long run. Your guess is as good as mine. The bottom line is we want to live yet it's our choice what we put in our bodies.

Blessings
JJ

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/20/2013 6:00 PM (GMT -6)   
Thanks JJ,

I have a rheumy, cardiologist, pulmonologist and my PCP who all work together to try to keep the MCTD under control. My local pharmacist is always on hand to answer my questions. I know that since I've been taking the methotrexate, the RA progression has slowed down joint damage, my scleroderma hasn't created any new "dents" in my limbs and the skin tightening is limited to my fingers, toes and some areas of my face. At one time, I was sun sensitive and now I'm not. My rashes and lesions are no longer frequent.

I'm very proactive about researching my meds and ask my docs lots of questions. I would love to be med free. I feel like I'm between a rock and a hard place. If I stop taking the meds, will the disease progress?
Having heart disease, is something that came on after the MCTD diagnosis. My heart meds help with my left ventricle working more efficiently.

Pain is something I control with meditation, and distraction. I use muscle relaxers when flares get too bad.
Eating healthy and exercise is a lifestyle for me. A positive attitude, my faith, family and friends get me through.

I guess many of us feel like we are in a dilemma over meds. Taking B-12, and vitamin D are 2 supplements that have helped. I also take presciption folic acid because of the Methotrxate. I've been on a SNRI, savella for over 4 years for the fibro, and will see about weaning off that med.

So confused!

Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1342
   Posted 11/20/2013 6:36 PM (GMT -6)   
Autoimmune diseases fall into 3 broad categories: polycyclic, chronic, and monocyclic. Poly means you have periods of flares and remissions. Chronic, you are always in some level of flare. Mono, you have one big one and then go into remission (that is, so far, what I had).

If your case is chronic it might require suppression forever. I have friends who have been on various suppression meds for 30+ years. Unfortunately, prednisone caused osteoporosis and plaquinel caused eye problems. Each med has specific potential side effects but all of them suppress your immune system which makes infection or cancer more likely over time. Some meds, like azathioprine are more associated with cancer....I have had skin cancer 5 times in 6 years.

You and your doctor should be reviewing your symptoms and meds at least annually and have a discussion about what, if any, could be reduced or tapered completely. If you flare then you know you need something to keep your immune system in check. Treating someone with an AI disease is more art than science. I came off all meds after almost 6 years and am ok so far. Only time will tell if my case was truly monocyclic or if it will eventually flare again.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/20/2013 7:59 PM (GMT -6)   
Thank you Bill for your input :)

I have gone off the MTX while being treated for infections, biopsies and my lung surgery recovery. I have become more symptomatic as a result, so I figure I must fall into the chronic category. As mentioned earlier I was on prednisone and plaquenil before the MTX. I have severe osteoporosis and was on Boniva and calcium supllements prior to the start of the prednisone.

I see my rheumy every 10- 12 weeks. My CBC along with a CMP is done at that time. Rheumy orders extra testing when he feels it is warranted. We have lots of dicussion. Pulmonary hypertension is a possibility for those with MCTD and I'm lucky to have only a mild case. This autoimmune stuff can sure be wild. I was referred to a diagnostic clinic where I have a wonderful pulmonoligist.

I'm happy for you Bill and hope your remission lasts forever!

Hugs, Robin
Fibromyalgia, Adenocarcinoma survivor, Lung Lobectomy, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/20/2013 11:20 PM (GMT -6)   
Bill I'd like to thanks you also :)

I never knew there was 3 broad categoies. In 1997 I had a big one that lasted 4 years, then went into remission. Then 4 years later came out of remission for 4 months thanks to a shot of 120mg of prednisone. Guess I must be a Mono like you. So far so good.

Blessings
JJ
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