TheLupusSite.com banner

1 - 7 of 7 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter #1
Hello out there - I was diagnosed with Lupus approx ten years ago and have only had the odd minor flare up - usually self inflicted (too much diy etc) until recently that is! A couple of months ago I develped severe joint pain ankles, wrists, fingers etc which have responded extremely well to low dose steroids (previously on plx and diclfenic) - but the hospital now wants me to go down the mtx road and from what I have read on this site is not the most pleasent of options. I am early sixties and still working and would like to continue for a couple more years but need to know how mtx will affect my ability to continue a 'normal' life. So all and any comments, experiences very gratefully received.

thanks
 

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

I'm sorry to hear you've been having more problems lately.

I think that how people do on methotrexate depends very much on the person. Different people react very differently to medication. I believe a lot of the possible side effects of oral methotrexate can be alleviated to a great extent and many people here do well on it.

Is there a reason why they prefer trying methotrexate over something like imuran which might be better tolerated in many people?

bye for now,
Katharine
 

·
Registered
Joined
·
4,444 Posts
You should get many personal responses from those who know... but for now I can tell you what I know from others as I have no personal experience. Many people will take their methotrexate on Friday night, so if they do have any negative side effects it will dissipate over the weekend and they are well enough to work again on Monday morning. Often, any unpleasant side effects are temporary - only lasting a few months at most.

Some people will start at a low dose and work their way up and then have next to no side effects. Rest assured, there are many people who take methotrexate with great relief of their symptoms and it is the reason they are able to keep on working!

I am guessing that you have already been on Plaquneil (plx abbreviation - does that mean Plaquenil?) Is there any reason you aren't still on this medication or is it that they want to add methotrexate to it or replace it? You could also try some different NSAID's for pain relief.

Lastly, a thorough work up to make sure it's not something else causing the pain may be warranted. Frequently it is just assumed it's the lupus when it could be something else new that has developed (like pseudogout, among other possibilities).

Good luck with everything!
 

·
Registered
Joined
·
1,999 Posts
Hi, and welcome to the board. I've been on mtx for 17 years now. For me, it has been what has kept me alive.

Yes, you may have reactions at the beginning. The reason chemo drugs are used for lupus is that they kill off rapidly dividing cells, which is what inflammatory cells do. [cancer cells are rapidly dividing cells] So, the joint stiffness and soreness is usually caused by the die off of inflammatory cells. After a couple days, you will find that they are flushed out, and you are feeling better. You MAY be more tired, need a nap or two, for a couple days. My cousin told me that we need "the garbage truck brigade" to clean out all those dead cells. Sounds good to me!

Many people have been told they should not take the folic acid on the days they take mtx. Well, my oncologist and rheumatologist told me that we SHOULD keep on with that for the whole week, not skipping it. The reason folic acid is used is that it will neutralize the mtx and protect your healthy cells from being damaged by the chemo drug. Mtx and folic acid are one chemical bond different. If you go to higher levels of mtx, you will be prescribed a rescue drug: leucovorin calcium. It is a "pumped up folic acid" and will slow down the mtx and give better protection for healthy cells. Again, both doctors told me to not stop folic acid even when adding in the leucovorin.
[under cytotoxic drugs I have a blip about my years of experience with mtx.]


Sally
 

·
Registered
Joined
·
14,661 Posts
Welcome to the forum Peth but I am sorry your lupus is rearing its ugly head.

I don't know what 'plx' is but Plaquenil is the usual first treatment and if you were on it and came off it it would seem sensible to start it again. It is often taken life long as what has been described as 'inusrance', to reduce the chances of the lupus becoming active again as well as its many other benefits

It does take a few months to become fully effective though and many people take low dose Pred and use NSAIDs during this time or whatever is needed until it is apparent that whether the Plaquenil will be enough. I think the Methotrexate takes several weeks to be effective or not enough, and then the dose might need increasing until it is.
I haven't taken it myself but I have read that the injections are better tolerated than the pills although of course the pills are easier to take.

The doses used for lupus arthritis and RA are lower than those used in chemo for other purposes and the list of side effects include absolutely every possible side effect ever recorded at these higher doses.

I would definitely want to start Plaquenil and maybe after a few weeks possibly add another antimalarial called Mepacrine in the UK, Quinacrine in the USA. This can be a very effective combination for lupus when there there is no organ involvement and a very good base combination with other meds added as necessary.
Maybe the lupus has changed and there might now be a strong RA element with joint damage occuring. Currently RA is treated aggressively to get it under control and prevent further damage.

Best of Luck

Clare
 

·
Registered
Joined
·
4,968 Posts
Hello Peth and welcome to the forum.

I am getting ready to start Methotrexate myself so no personal experience from me either. I think you have been given some good advice here and others will be along with their personal experience to add to the posts here.

Just wanted to welcome you to a great place and come join us in the chat room sometime. I hope to get to know you better and good luck moving ahead.

Keep us posted as to how you make out on the new meds.:wink2:
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Hi and welcome to the site. I don't know anything about the medicine you are asking about but I am sure that there are a lot on site that will be along to help you with that. I did want to welcome you and say hi. I hope that you find away to do all that you want to.
 
1 - 7 of 7 Posts
Top