Re: MTX Beware & Thank You to those who supported and encouraged me...

[Guest guest]

First off, the methotrexate should be prescribed with Folic Acid 1mg to be taken daily. Blood tests (Liver Function Tests--LFT's) should be done monthly to avoid toxicity. The other choice is to use Methotrexate injections as that bypasses the liver.

Interstitial Lung Disease is a nice name for pulmonary fibrosis. Pulm fibrosis (IPF--Idiopathic Pulmonary Fibrosis) means scarring of the lungs. Sometimes this happens with asthma, emphysema, COPD, ROPD (Restrictive Obstructive Lung Disease--aka sarcoidosis and many others) pneumonia (pneumonsitis is inflammation of the lungs with fluid) -- so it's hard to say what caused what.

You used PsA-- you'll need to share what that is-- I'm thinking psoritiac arthritis? This is another of the autoimmune processes, and is not uncommon with any autoimmune disease.

The methotrexate is being used to bring the systemic inflammation down-- it would treat the anklyosing spondalitis, the psoritic arthritis and the lung inflammation. It is an immunosuppressant, so yes, you would be more likely to catch viruses, colds, pnuemonias, etc. If it is followed with Folic Acid, it is generally well tolerated.

What has the bronchoscopy shown?

Are they wanting to put you on prednisone?

That is first line treatment, and generally brings down the inflammation from all the above issues to a more "quiet" state. It also is immunosuppressive.

With as many AI processes that you have going on-- they are probably going to need to forgo the prednisone and get to the chase. What happens is that as soon as the pred is withdrawn, all the symptoms that were being masked come roaring back. So it is important the Rheumi look at other steroid sparing choices.

Imuran, Arava, Plaquenil, --(DMARDS disease modifying antirheumatic drugs) are going to be the next choice, and you will have to try several before you get the combination that works for you. The next line is BRMs--(Biological Response Modifiers)-- Humira, Enbrel, Cellcept, Remicade, are all BRMS.

With ANY of the immunosuppressants-- it is so important to take Folic Acid-- B9-- prescription strength. They all wipe out the B's-- and that puts us at higher risk for pernicious anemias and lymphatic issues.

Fibromyalgia will respond best to adequate fluid intake, and get rid of the processed foods. Red meat should be eliminated-- or at least cut way back. Alot of people respond well to yoga-- gentle yoga or Tai Chi. The fluidity of the movement gives you flexibilty without alot of strain on the joints. MSM powder also helps with the joint muscle pain, and helps rebuild collagen in the joints. You can get it in capsule form, but it takes alot of capsule to equal 1 tbsp of MSM in water-- it doesn't taste real good, but the powder works very fast! (You can add it to a cup of tea or juice or add a tsp of sugar - I just put it into 1/4 of water and drink fast-- then I follow it with my tea.

The reason your MD decided to wait and see what was happening with the chest xray (CT's) is that sarcoidosis often shows up with no other symptoms. For most people, it will resolve spontaneously. The challenge is that you were already having symptoms of body pains elsewhere-- and they figured- Fibromyalgia, it's all one and the same to most GP's.

For us, it's a sign of systemic involvement-- but you will be the educator for your docs on this. We have a tremendous library of articles-- I suggest Dr. Sharma's-- www.sarcoidosissharma.com and print out his info. WWW.stopsarcoidosis.org also has some excellant brochures-- and you can order them at that site. I highly recommend both.

The MTX did not make your hips fuse. I suspect that was from the ank spond. Sadly, that is one of the issues. Prednisone makes those kinds of problems worse, as it leaches the calcium out of your bones if you are on it long term. That is also why steroid sparing meds need to be the choice and once the inflammation is down, you'll feel a whole lot better.

Do not panic. I know this is scary, but it is not a death sentence. You will find ways to adapt, and keep going. It is a time consumming process, and isn't going to happen overnight. You will have to try a medication, and see if it works sometimes over a period of 90-180 days. If it doesn't work, they'll have to try a different one. Plan on a year or two to really get on top of this. And you will get on top of it!

As far as moving to another area -- there are no perfect areas that I've heard of. We have 600 members all over the world, and no single answer. Be patient, and trust that the Rheumi and the Pulm will communicate with your GP-- (if you don't have to go to the GP to be referred to another doc, it's best) but even if you have a HMO plan-- that requires referrals-- ask that they give or send you a copy of the test and appt notes EVERY time you see one of them-- so that you can keep your docs all in the loop. Keep a copy, and give each of them a copy-- that way there is no-- "haven't heard a thing from.."

Hope this helps,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, January 11, 2010 5:35:55 AMSubject: MTX Beware & Thank You to those who supported and encouraged me...

Thank You to those who supported and encouraged me...I just wanted to say thank you to those group members who took the time to help me journey through the discovery of what my lung problems were. The update is below. Of all the groups I searched and reached out to, based on current dx, and potential differential dx like sarcoidosis that were being tossed around, you folks were by far the most helpful and understanding, so again, thank you for your support!Prayers and gentle hugs to all of you,Cheryl M (AK) - respiratory acidosis, et al++++++++++++ +++++++Part of this post is my need to vent. I think we all get there from time totime. Part of it is a warning to others taking methotrexate (MTX)!!I have not posted or been on the list for awhile; actually, not much sincestarting on my journey to determine the source of my lung/breathing/ pulmonaryproblems a few months ago. It has taken a long

time to get referred to apulmonologist, then only b/c it was easy to add it on to rheumatology and dermappts!! I am frustrated with my body, the doctors, and how I achieve... or whatI am supposed to do in order to live a life with any quality, given the multipleoverlapping dx I now have.The latest additions to the laundry list include methotrexate lung, akahypertensive pneumonitis, aka intersistial lung disease, which may have startedshowing up in my CT scans with lung nodules as much as 4 and a half years ago,but more recently, absolutely about 9 mos ago when the radiologist and PCPlocally did not know what they were looking at, so decided to simply sit backand watch to see what develops!!! When the pulmnologist redid the CT scan inDecember, he immediately scheduled a bronchoscopy and lung biopsy, stating thatit is absolutely NOT something you simply sit back and watch. If my doc/PCP hadever

contacted the pulmonologist for a telephone consult last summer, orimmediately following the CT scan, or at any time, as he claimed he was going todo, he would have known how serious it was. Going back now and looking at allthe signs, someone should have picked up on it long, long ago. The MTX wasSCREAMING to be noticed for its toxity and damage to my body!!! No one tooknotice or did one thing until I finally flared my Ps/PsA enough to warrantsending me south for the rheumatology consult.I constantly complained to the docs I was seeing locally about left hip pain,extreme fatigue, inability to do anything but sleep, lack of energy to even takea bath, and need to use O2 throughout the day in response to exhaustion,headaches, etc. Turns out he never sent the tests and paperwork he should havesent to set up 2 out of the 3 consults. My left sacral joint has fused and I nowhave an added dx of ankylosing

spondilitis. Rheumy believes PsA is undercontrol, but my skin and fibromyalgia are not. Docs locally keep blaming pain onthe PsA, but the rheumy is saying that it is the FM that is totally out ofcontrol and they are already doing everything poss to control it.Obviously, my PCP is dropping the ball. When I start inquiring, I get told bypeople who should know, that all the docs here practice in the same manner andthat changes docs locally is probably not going to change my outcome. Does thatmean we move? Where? Where does the temp stay in the 70s with minimal barometricchanges? We love it here in many ways, but I just seem to be getting worse andworse!! Would my diagnoses be the same and my body progress in the same downhillmanner regardless of where I am, or the quality of docs, or is quality of lifeand progression of the disease directly tied to quality of medical attn??? Ifso, where do we go?? What do

I do now??I am so frustrated I could scream!! In the rheumy notes and what I find on theinternet, the best thing I can do for the FM and AS is to start exercising evenif it is painful. Yet, in person, he empathized with the issue of exercise,stating that with the Ps flares on my skin, probably no pool, w/feet issues,pool is best, might be good to get cycle for exercise. Seems like a bit of cyaand contradictions to me, but clearly, somehow, I need to get moving again. Ofcourse PCP is out of the office again!! Rheumy is 900 mi away and will only talkto PCP about what next stept o take, but is also clearly miffed that I had notbeen to see him in 2.5 yrs.I feel like I am drowning in a sea of issues with no good answers!! Thank youfor listening. Sorry for the rant!!Sincerely,cmoralez (in the rain forest of SE AK)