Turned down Methotrexate

[Douglas]

A few months ago I posted about having to stop hydroxychloroquine as I had a terrible reaction to it and was told to come off them after five weeks. I'm based with the NHS by the way. Anyway my rheumatologist (first time seeing her instead of a consultant) offered me methotrexate and said alcohol is to be avoided and straight away I said No, I like a drink at the end of the week. I enquired about an alternative for my bad fatigue and she said there was none. (surely that is wrong?). I think she said this as I never attempted the methotrexate and maybe I have to try that before moving onto the third choice. I was told that I could go to classes to learn how to control my fatigue! What a joke.

I was also given a blood test to see if I am suitable for azathioprine. She assured me that drinking alcohol under these tablets are ok but I'm reading a vastly different view of this online and I searched in here yesterday and I saw enough of peoples experiences to put me off these pills. Way too many terrible risks involved.

My post is for anyone to point out alcohol friendly medications for me to write down and show her the next time.

I'm resigned to a life of fatigue now.

Quitting alcohol isn't an option. Honestly, the only time I'm relaxed is when I have a drink in me.

[Sharon]

Unfortunately all drugs offered to SJS patients are toxic in one way or another
and many meds don't mix with alcohol.
You may want to look into LDN as an alternative option. Not sure if it's okay to take with alcohol
but you can check.

[Carolina]

Dear Douglas,

There is no answer to easy fatigue that doesn't involve suppressing your immune system, and stopping the attacks and inflammation which cause the fatigue.

I take Medrol (methylprednisolone) which suppresses my immune system and therefore the inflammation which is so exhausting.

The possible side effects of Medrol are well known.  I accept the risk because I take the Medrol in order to tolerate the IVIG which bolsters my Deficient Immune system, and keeps me from getting sick all the time.

Douglas, those of us here deal with the 'rock and the hard place' all of the time. We use a variety of strategies to cope with pain, fatigue, depression, which are the hallmarks of an Immune Disorder.

Classes are not a joke in my opinion.  I had an 8 week course in pain management at Duke Hospital and learned more strategies.  I cannot take any opioids and am released after surgery with only Tylenol.

Life is risky at every moment.  And then we die anyway.

You are looking for a risk free solution and let us know when you find it.  We will be delighted to join you.  We will all drink to that!

Regards, Elaine

 

[Douglas]

Ok Thanks, I will do some more reading on this.

[vrystaat]

If you have fatigue associated with your illness, you should try these drugs:

Provigil
Adderall

Both have been life-changing for me.

Ask your Rheumatologist. Please do this. We deserve the relief.

[araminta]

Vrystaat:   I'm interested in anything that can help with fatigue.   What if any side effects did you notice with these drugs?    Thank you for your advice.

[trc1962]

For me Imuran was a god send as it pretty much kept my neuropathy and fatigue symptoms silent. I just did so well on this med. However, after about 5 years I needed a higher dose and in time it began stressing my liver and I had to go off it. I do not drink anymore as it makes me feel awful but I had an occasional glass of wine when I was on it and it was fine. Ask your rheumy I guess. I said no to methotrexate because in some people it causes bad hair loss and I didn't want to take that on. Also the rheumy said you don't feel too good the day after you take it and that wouldn't work for me as a teacher. I am on cellcept now and it helps, but not like the Imuran did.

[Sharon]

Hi Vrystatt- Can a rheumy prescribe Adderall? Did it help you with any additional symptoms?
(I tried Provigil once years ago and I felt really faint on it)

[Jasper]

Rituximab infusions have vastly improved my fatigue and energy level. Rituximab has also improved my joint pain, peripheral neuropathy symptoms, cognitive function, and saliva flow. It has been a miracle drug for me.

[A Mom on Spin]

I feel your pain.

I, too, like to have a glass of wine and spent almost a year on methotrexate and then lefluminide - both of which can affect your liver. In each case I was allowed a limited amount of alcohol.  In the end I needed to discontinue them both because of side effects.  Imuran is the next drug of choice and i believe does not have any major restrictions on alcohol so maybe it will work for you.  I experienced a very rare reaction to Imuran so that didn't work for me either.   Right now I'm am anxiously waiting to see if Rituxan will be the answer to my prayers.  It's been seven weeks since the first infusion and so far, no relief from joint pain or fatigue. 

Liz 

[warmwaters]

To give one experience - I took Provigil and felt much more energetic on it. After 3 days I was unable to go to sleep, and totally hyper. I often overreact to meds. So I decided (with doctor's advice), that the best way for me to use it was "as needed", such as having to talk with an official, or review some complicated paperwork, or something where I need to be sharp.

I no longer use it, but that was my experience.

If you have fatigue associated with your illness, you should try these drugs:

Provigil
Adderall

Both have been life-changing for me.

Ask your Rheumatologist. Please do this. We deserve the relief.

[SjoGirl]

Hello Douglas,

A few thoughts, all meant with the best of intentions:

1. 10 years of living with Sjogens, 9 of which lacked sufficient treatment, taught me that my inability to relax was partly due to not having proper treatment.

2. I tried Mexotrethate twice for six months each time and could not tolerate the side effects. I can't take Prednisone either, but don't see LT use of steroids as an answer anyway nor does my rheumy.

3. Azathioprine, which I just started on in the spring has been a godsend along with Gabapentin for nerve pain and Evoxac for saliva production.

Once I found the right combo of meds and right exercises (working with bands, walking, floor work) I could relax and I sleep like a baby most nights (unless work or some other issue is keeping me awake.

I miss enjoying a drink with my husband and plan to ask my PCP about it on Thursday. I suspect she'll say nada. As for me, if she says no I'll live with it because I've already lost too much of my life to this disease. I also am loving feeling almost normal again.

We each have to make our own decisions about what we can and cannot give up, I wish you well as you continue to consider your own situation.

[Fanciefrancie]

I spoke with my rheumy last week about fatigue.  I was prescribed Vyvanse(like Adderall) a few years before my diagnosis.  I was having trouble focusing and I was not fully with it while driving.  This all scared me. Of course looking back it was my SJS.  Because I still take Vyvanse and despearatley need it for my fatigue I asked my a Doctor if this was normal.  I felt like a fraud for taking an ADD/ADHD drug if I don't have it.  He basically said that I need to be  present for my children and my job and if by not taking it affects that then he doesn't see anything wrong with it.  He does want me to try the new(ish) FDA approved Lupus drug, Benlysta.  He says it has proven to help fatigue more than anything.  My hope is that Benlysta will be what I need to get me off of the Vyvanse.

I would definitely ask your doc about a stimulant and/or Benlysta for your fatigue!! 
Good luck!!