Lymph nodes

Is methyleete the same as methotrexate? If so, it does drop your immune system. You'd need to stay on your prednisone as a constant therapy else it won't have the same positive response. I only took antibiotics when I had an infection so not sure if that is your case or not. Taking antibiotics on a regular basis can have a negative effect as from what I understand your body will build up antibodies causing the antibiotics to not work as intended. All meds definitely have the risk of side effects, make sure you're telling your doctor.

Keep in mind I'm not in the medical field but a sarcoidosis patient if 18 years ... but if I were you, I would ...

1) talk to your doctor about longer term and constant prednisone use (if your not on it consistently). Taking it in and off, or only when you have lymph node swelling, will not treat your sarcoidosis properly.

2) If you've been on prednisone long term and it's not keeping your sarcoidosis at bay, for me methotrexate, plaquenil and folic acid was the next step. These were only when prednisone alone wasn't doing the job. My understanding is these are still the 2nd layer meds but there may be new ones I don't know about.

3) keep in mind your lymph nodes may swell and go away throughout your treatment so don't get discouraged but be sure you're being treated ..

4) I'd make sure I stayed on top of this with your doctor so that your sarcoidosis doesn't go untreated.

Something else I can share as a FYI .. I first had sarc in my lymph nodes and my lungs. After 2.5 years or so on prednisone then the others I mentioned above then my doctors determine my sarc was in remission and had stayed there so I went off all meds. One year later I started having other problems and after a bone marrow biopsy I learned I had sarc in my bones from head to toe. In addition, I get active modules still in my lungs but nothing like before. I guess what I'm saying is I was on treatments for 2-3 years, off for a year and found it never truly went in remission .. but did stop ruining my lungs.

I tend to ramble so I apologize for that. I know what it's like to start out with this disease and to get so frustrated you want to scream. I want to help anyone I can and I can get pationate about it lol.

Deb

I have tried to stay on top of it my doctor hasn't done a biopsy just reading results from my two surgery's I have had and sent me to a pulmonary specialist and recently seen a dermatologist but the only thing it has affected is the left groin lymph nodes with a few peppered nodes around my lungs. He says being on prednisone for long period of time can also have the effect of lowering the immune system this started 2002 but went in remission till 2010 and has been full force affecting me since then

Ah .. so you've battled this long term too. Not fun! Now I understand why you've been on and off prednisone. Yep it sure can lower your immune system. You've definitely been on top of it and I'm so glad to hear it's stayed pretty much in one main area for you. I didn't realize all this when I last responded, hope my response didn't come across wrong! 🙂

Not sure how long you've been on prednisone this last round but prednisone doesn't usually weaken your immune as much as methotrexate .. from what I've learned. I had to take prednisone for 9-10 years total, unfortunately. It definitely has its drawbacks, side effects and weight gain, ugh.

I hope you're able to get it to the point of inactive. Best of luck!

Deb

From 2010 to late 2015 they had no idea what was going on or what was causing my issues that's when I found my doctor and have been on and off of prednisone since then just last yr I was was on it 7 times you didn't say anything that was out of the way I'm still learning about this disease that apparently a lot of ppl have and I'm trying to understand it and hopefully take ideas to my doctor cause I for see me under the knife losing more lymph nodes and eventually if that continues I'll eventually lose my leg and that's nothing I intend let happen if I can help it.

I can sure understand not wanting to have surgery and eventually lose your leg. From my experience, it's worth taking prednisone for a long stint of time to see if it can get it into remission one and for all OR say the heck with the prednisone and move onto a stronger treatment. There are several treatment options but I'm most familiar with folks going from prednisone to methotrexate and such. Treatments above methotrexate tend to have additional risks. For example, I went to Humira and am now getting Remicade infusions every 6 weeks while take methotrexate, plaquenil and folic acid for my sarcoidosis. I can't recall the other med names but I have friends who have done well on them as well.

I hope you can get things going strong and get this to go inactive.

Hi Scott,

It is always great to see someone do so well and kick sarcoidosis' butt! Did they repeat your PET scan or was they confident with a CT or MRI? I ask as I keep thinking mine has to be inactive after all these treatments and wonder if I am just dealing with damage and scarring left behind. I've asked my doctor and she's talked about doing another PET scan (it's been 10-11 years) but hasn't done it yet.

Thanks for your time!

Deb

Have you had any major issues with being on either medicines for long periods of time I believe that is why my doctor won't put me on for long periods of time but also that may be why I'm frequently having the same issue everyou other month or two and right back on meds frankly it's super annoying

For prednisone, I gained weight.. developed diabetes ii and developed hypertension. After I went off prednisone, I've lost all the weight and then some, my diabetes is gone (monitored) but I do still fight hypertension ..however I have other med issues that may cause that.

Methotrexate ... I had my liver emphzymes test high a few times and was taken off it once for that I believe.

I did catch colds and such easier on both. But, the rewards outweighed the risks in my case.

I know some folks who have different side effects since everyone is different but these were mine ..

Personally for me I have had less side effects with methotrexate than I did with that steroid prednisone. The doctor didn't want to keep me long-term on prednisones. At first the prednisone worked but then my sarcoidosis came back just a strong then that's when the doctor at Washington University moved me to methotrexate. For the time being it has put my sarcoidosis into remission. I think it's worth trying the methotrexate personally

In the past two weeks I've had a CAT scan and MRI and turned up no sarcoidosis. From what my doctor has told me sarcoidosis for some people can last a lifetime or can be something that just flares up and can be treated with the medication again

When you are on the methotrexate my doctor was having me do bloodwork every two months to monitor my liver.

But I haven't noticed an other side effects

What did your Sarcoidosis affect most?

Mine was my lungs, coughing non stop. Finally my mom said that I was afraid to go to the Dr. (Deep down I was). Had a PET Scan done on the morning of July 3rd. The tech said with the holiday weekend it would be possible be Tuesday before I would know. About 4:30 that afternoon my wife came flying into the driveway in tears and told me we had to go to the Dr office. Not a good feeling when you walk in and they take you straight back to a room with the chairs sitting in the middle of the room. That's when they drop the bomb of possible Stag 4 cancer. Just getting ready to turn 40 with 4 kids. I guess that getting diagnosed with sarcoidosis was a blessing. Seeing that survival of Stag 4 lung cancer is 1%.

Hi Scott,

Golly can I relate to your experience. Twice I had the cancer scare shaken into me. First time was July of '98 when they thought I had lung cancer or lymphoma. I had the dry, annoying cough with shortness of breath and could not shake it. My doctor started with x-rays saying I had pneumonia then after about 5-6 months an MRI showed my lungs and lymph nodes and I had a biopsy the next day. Took 3 weeks to get my results as my doctor went to India on vacation. I got all my ducks in a row and was sure I was facing cancer. Low and behold, sarcoidosis.

After about 2.5-3 years, it became inactive and after time I was able to get off all meds (as you're working toward). I got married .. my husband and I did weight watchers and I lose all my prednisone weight and then some, I felt pretty good until a year later .. I think the summer of 2003 ..

I started having awful pain in my upper back around through my chest. After 4 days of it, I caved and went to ER one night as it aS really bad. I was admitted, a PET scan was done the next day after they ruled out my heart, and I soon learned it appeared to look like bone cancer. Off to an incologisr I go and soon after I had a bone marrow biopsy. Believe it or not, this doctor too was leaving for vacation (my luck) BUT she called me from her vacation to let me me know it wasn't cancer. She knew how scared I was.

The PET scan showed nodules in my bone from head to toe.

We thought it was in remission again and I came off the meds, again (pred first then methotrexate), another PET scan showed lesions on my spine. None of this would show via MRIs for me but my lungs did though and still do.

I'm ling winded, sorry!, but here I am ... not sure if it's still active or if I'm fighting scarring and damage ... but I have a specialist in every area just about and now have other autoimmune diseases to boot. I want to stop all treatment and see what happens but am so afraid to do that because I still have such pain and it mimics how I felt when first diagnosis in my bones. I also fear it will move to another area if I stop treatments, as it did last time.

Wow, so sorry for the king response but that's my sarc journey. Thank you for responding to me. I know I've already said it but I'm truly happy that you're on the road to recovery. Many MANY folks have one battle with sarc and occasional flares but no further issues. MANY patients! 🙂

Deb

By the way, please look over my typos! I'm on my phone and my fingers tend to get faster then they should lol.

Thanks for all the info I wish you the best of luck Debie and Scott I hope you stay in remission I am gonna talk to my doctor and see where his angle on this is and see what I can do to get ahead of this and I'll be posting in here as I I proceed through this till I'm either better or gone hopefully there's something for everyone to learn from.

I can relate! I can look at all the cough syrups that have been prescribed over the years

I can remember right before getting diagnosed I went urge-a-care and the Dr there getting on to me to turn my head and cough to not get her sick! I told her you can't catch what I have!!! She gave me more cough syrup.

I pray that this is a one time thing and it's gone.

Unfortunately from what I have read environmental conditions play a big roll in Sarcoidosis. Lumber jacks get this a lot from cutting lines. I work in construction and the wood we use all the time is "PINE". Also I have worked in some pretty nasty areas. Renovation work at a live coal plant, built a parking garage on an old petroleum facility (that was probably the worst of many bad places)!

Need to check my spelling before replying

Yep I've heard the same about environments can play a role in how sarcoid effects a person. I don't cut lines (lol) but I live in what is often referred to as the "chemical valley" due to so many chemical plants sitting along the river here. One has a huge class action lawsuit against them for release C-8 into the river which contaminated local water facilities, therefore drinking water for thousands of people. C-8 is known to cause cancer along with many other things. Sucks!

BTW, I had far more typos then you did! LOL

Best of luck to you!