The Lupus Forum banner
1 - 8 of 8 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter · #1 ·
Yesterday my wife received her CNS Lupus diagnosis. I can't say that it was unexpected or even that it is unwanted. She has been sick with another AI disease for 3-5 years and it is almost identical to CNS Lupus. So much so that many think it is the same disease. After years of seizures, short term memory loss, peripheral neuropathy, tremors, myoclonus, severe headaches, and periodic periods of almost complete sleeping, this is almost welcome.
She has been on high dose prednisone for 3 years now with several rounds of solumedral as needed. she has been doing monthly IVIG infusions for 6-9 months now along with countless other meds.
A few months ago she had to discontinue her methotrexate due to liver months of abnormal liver numbers.
After it worked its way out of her system, AI arthritis emerged that really pushed the drs over on the cns-lupus diagnosis.
I am wondering which immunosuppresants people here have found to be the most effective to minimize the symptoms of the arthritis, as well as the other CNS symptoms.
The IVIG works great on the neurological symptoms--the hallucinations etc--but doesn't touch the arthritis.

Any ideas?

Thanks
 

·
Premium Member
Joined
·
7,567 Posts
Hi, welcome to the site. I am sorry for your wifes diagnosis, it sounds as though she has had a terrible time. I am afraid I am not familiar enough with meds to be able to help you. Someone more knowledgeable will be along shortly, some of our members also have cns lupus.

The site is very friendly, supportive and full of helpful info. I hope things improve for your wife soon.

Take care

Deb
 

·
Registered
Joined
·
7,800 Posts
Hello countryboy and welcome :)

Sorry to hear that your wife has been so ill and is having the problems she has now with meds.

I'm afraid that I too can't help much as which meds we take is a very individual thing. Where one med will suit one person it may cause a reaction in another.

The other immunosupressants commonly used are imuran (azathioprine) which seems to have a beneficial effect on most aspects of the disease and cellcept (often used for people who have kidney involvement but also for others) but I don't know whether she has already tried those or of her doctors think they would be sufficient.

There are then more aggressive treatments but perhaps that's not really what's needed here as the idea is to control the arthritis symptoms. It really is something that she needs to discuss with her docs and sometimes a question of trial and error.

Another option may be to work with other drugs that target the arthritis pain but that may mean that there is insufficient disease control. I would imagine that the doctors would prefer to replace her methotrexate with another disease modifying med if they can.

Sorry I can't help more, bye for now,
Katharine
 

·
Registered
Joined
·
4,444 Posts
The first line treatment for lupus arthritis is Plaquenil, which is not really an immunosuppressant. It takes 3-6 months or longer to start working but helps many people with lupus joint pain and fatigue to some extent. That is probably the first choice of treatment and then they would likely move on to Imuran or Cellcept from there as already mentioned.

It sounds like your wife has really had a tough time of it & I hope the diagnosis is completely accurate this time and she can get on medication(s) that can help all her symptoms.

She can also try out some different NSAID's to treat the joint pain... sometimes you can find one that makes a huge difference.
 

·
Registered
Joined
·
631 Posts
Hi Countryboy,
I have no advice I'm afraid I just wanted to say hi and welcome to the site.

I hope your wife can get the treatment she needs and that things start to get easier for you both very soon.

Take care
Elle x
 

·
Moderator
Joined
·
11,410 Posts
Hi Crountryboy,

Welcome to the lupus site. I am sorry though for what brings you here.:(

There are drugs that are DMARDS. (disease-modifying Antirheumatic Drugs) Methotrexate is one of them.

Here is a link for you to read. It is actually part of this web site.

http://www.geocities.com/Heartland/Acres/7228/cyto.html

Like Maia has said there is several different NSAIDS that can be tried.

What works for one doesn't mean it will work for someone else the same way.

An example is I have been trying methotrexate and it is doing very little for me.

Please tell your wife hi and she is welcome to join the site too.

Take care,
Lyn
 

·
Registered
Joined
·
3,471 Posts
I'm so sorry you have had bad tmie, i say you as it effects you as well as dear wife

im not sure about the meds, but i also have seizures now due to cns playing away, they have taken me off Azathioprine and put me on MMF (cellcept) as they say it workes better on the brain, i dont know. they are still talking about iv Cyclophosphamide , weather they do i will know next visit.

i hope your wife gets the best care posible, i know it must be a mind fiield too for the dr's trying to treat us, sometimes i think it can take a while for things to come together, we my not like it, but after all these dr's are only human too, i hope they can control her apin too, i hve never been out of comlete pain ,so sorry i dont have the answers.


All the best Lin
 

·
Registered
Joined
·
1,101 Posts
Howdy,
Glad you found this site. The people here are a superb support network.
I really would like to congratulate you on being such a supportive spouse. My wife is an amazing support for me with the SLE but it costs her a lot. It will be emotionally expensive for you, as for any loving spouse with a "Lupie". The first woman with Lupus I ever knew had to endure her husband's inability to persist "in sickness and in health". For him, it was only "in health". I pray that you are made of sterner stuff.
Kathryn has loved me uncomplainingly for a long time; our forty-second wedding anniversary was this year and I have had AI symptoms the whole time, sometimes much worse than others.
I wish you all the very best! You can do it.
Douglas+
 
1 - 8 of 8 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top