another med to be added

[irish]

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

[Joe S.]

I hope it goes well for you.

[Carebear]

Wishing you positive results, Irish.  Sorry to hear things have been so difficult for you.

[Head2Toe]

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.

[ohiolady]

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

[susanep]

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

[quietdynamics]

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.

[gurs]

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

[SjoDry]

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)

[cccourt1942]

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

[irish]

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!!!

[Poppy]

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

[irish]

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

[lindapeto]

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

[irish]

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