Just to let you know that my immunologists office had care conference on me yesterday. Today they called to let me know that next month when I go for infusion they will do a bunch of blood work and a lung cat scan. When they get all the results back they are starting me on Methotrexate and folic acid.
I have been going down hill the past few months and just barely hanging in there as just not strong enough to do a whole lot. I have gotten so I want to sleep all the time or at least sit a whole lot. I developed a rash on arms and legs last week that is hard to discern and had gone away enough that hard to even make a guess. It is different from my bullous pemphigoid.
I have also started aching in every bone and muscle in my body and walking is harder plus an increase in weakness and dizziness/balance issues. Soooo, they have to do something and it is time to try this as the cellcept didn't do a whole lot for me last year. Have to admit that it was probably hard to assess the cellcept cause of all the stress I was under caring for my sick hubby and also dealing with my sick son.
Time will tell how this goes, but will remain optimistic because as we all know, every day can bring us a different set of ailments Irish
I hope it goes well for you.
Wishing you positive results, Irish. Sorry to hear things have been so difficult for you.
Sending you great big (but very gentle) hugs Irish.
I've found my vertigo/balance issues have diminished in direct correlation with my physical pain. That's a big clue to me that there's a link. Hope things settle down for you SOON.
Sending you a big hug. My heart goes out to you because you have been through so much. I sure hope this new treatment works for you.
Anna
You have been through so much, and you are in my prayers and all thoughts. I hope the new meds help you, and make a good difference.
You deserve some relief time, and some time to enjoy life.
Hugs my friend,
susanep
I started Methotrexate and folic acid and Vit D/B12 sublingual per Rx with a prednisone taper and found the results to be positive.
I did have to stop to get vaccines. 2weeks prior, 2weeks after. (If I had known I would have had vaccines before starting). The interruption showed me how well the methotrexate helped.
Hoping you have a positive outcome as well.
Aghhhh..hang in there Irish..maybe this will be a blessing in disguise? maybe metho will be your miracle drug and make you
feel better. Im learning now, that I really need to get on the ball and start trying some new meds/therapies too.
Sure you will do fine!
Gursie
Irish,
Don't you take IVIG for immune deficiency? If so, are you concerned about taking the Methotextrate?
I have recently had Methotextrate suggested to me. But my IVIG infusions have not been protecting me as well in the least few months. My least infection almost landed me in the hospital.
Even though my Immunologist has other patients handling the Methotextrate okay, I am very worried about taking it (based on the last 2 infections...they are getting worse & also having had 1 lung removed).
As usual, I did some research. There have been some studies with positive results for taking very large quantities of IVIG...of course I was reading about specifically dealing with autonomic & peripheral dysfunction). RipVann takes the large doses for her neuropathy with very good results. Is this something that might be considered with what your current symptomology is?
I hope you will get some relief soon.
Take Care.
SjoDry (Sandy)
dear Irish...that is supposed to read as you are "dear" Irish!
How much more? Thinking of you, wishing you good results...and want to say: WHAT a medical team! I believe you are in good hands.
Here's to a good day!
c3
I am so blest to have my medical team and all the great nurses and other staff. Going for my infusion is like old home week all the time. It is always very comfortable there and the patients always get to know each other and spend time visiting when they feel up to it.
The doctors are on call 24/7 also so if we are having issues we can all and get some help. This is great as most of the other doctors can't always deal with our issues. I have to admit that I have now gotten an Internist who is very available and I can email her and usually get an answer the same day.
I have 3 sons and 2 have seen my immunologist and one is being treated with methotrexate for autoimmune. I have one more son that may end up seeing immunology and probably one grandson who might need to see them. The immunologist who started this practice is licensed as an Internist, Pediatric Oncologist, Hematologist, Immunologist, Allergist and Anatomical Pathologist. He is a genius level guy who understands all these in depth things. I wish there were more of him. He started a practice well over 20 years ago that treats people who fall through the cracks. The good thing is he isn't egotistical which is really a blessing. He has one other doctor in his practice plus a super smart and good RNCertified in Immunology. I have been on IVIG going on 9 years now. I am sooo lucky!!!
I am so sorry that you are experiencing all these problems.
I'm very new to all this but there was one thing that I picked up on your post, and that was you were experiencing weakness/ dizziness and balance issues. I also have these problems and just wondered if it was Sjogren's or the Plaquenil that caused these symptoms.
I do hope that things improve for you.
Take care. x
Poppy, The weakness is part of my myasthenia gravis diagnosis and the balance issues are autoimmune also and can be blamed on myasthenia, sjogrens or Hashimotos. Balance issues are a part of autoimmune and can have other components also. I have the proprioceptive disorder which is part of the sjogrens. This is the inability to always be able to know where our body is in relation to the world, so to speak.
One of the first symptoms I had from this disorder was knowing where to place my feet when I walked. I would have to keep my eyes on the ground so that I did not lose my balance and fall.I asked many doctors about this and none of them could give me an answer. The one thing about autoimmune disease us that nothing is written in stone and everything can change from one time to the next. Balance issues are very common and can be often ignored or deemed not important. Be aware that autoimmune disease can also cause deafness along with the balance issues. Irish
Dear Irish,
I know the feeling when all you can do is sleep, or barely sit up, propped.
This, too, will pass.
Will continue in prayer for you,
Your friend,
Linda
The one thing we know for sure about our autoimmune disease is that it changes from time to time and we never know when or what will happen next. About 50 years of this stuff has been interesting to say the least. Irish
hi irish, I'm fairly new here and learning a lot from reading people's posts and what SJS can do to us. I just wanted to say that I wish you the best and sorry you are going through a rough patch. It sounds like you have an awesome medical team.
Hi Irish
I am new here, I have been exploring this board , and have read many of your posts. You are a very kind, informative person, and I can see you have been through a lot.
I am thinking of you, and hope you are feeling better soon
Thanks for the explanation Irish.
I take the IVIG for my Myasthenia gravis and I do have low t-cells. My t-cells have not been checked for a couple of years but my white cells are all in normal range right now which is highly unusual.
Actually, my infections have been less and not nearly as bad as they used to be. I did have the mycobacterium infection years ago while on methotrexate but was not even diagnosed with myasthenia, hashimotos or low t-cells at that time. I was not on the ivig either.
My doctors have been watching me for years and checking my blood work, etc and at this time they feel that being on the IVIG should protect me. Also, my doctor has worked with bone marrow transplants for years and other immune deficiencies and feels it is worth trying the methotrexate because I was on the cellcept without any infections --- the dosages that we take for autoimmune is so much less than what they give for cancer that doc says the risk of infection is not as high as one would think.
I am still addressing all the aspects of this and right now am trying to sort out my physical issues, etc related to an immune suppressant. Also, my doc thinks that it is possible that my low t-cells may improve with the methotrexate as they are not for sure what is causing them. They could be more related to the myasthenia gravis than an immune deficiency. My doc can explain this stuff and he understands it but I sure don't.
I used to culture out all kinds of bad bacteria years ago and have all kinds of terrible symptoms but my symptoms have been much less and seldom culture out much other than yeast. I am to the point where I am thinking that a lot of my "infections" are an increase in mucus associated with lymphoid tissue in my throat. Time will tell. I know that if I stop my plaquenil things get worse and when I restart it some of the symptoms decrease. Really, really weird. Irish
Dear Irish,
I'm sorry to see that you've been experiencing more symptoms. You have been through so much.
I hope the tweaking of you medications help you to feel better soon.
Sending you many gentle ((hugs)) from OZ.