Methotrexate and Azathioprine effective or not?

[maggielee]

Hi all,

I have been following posts, but not making any recently. I was diagnosed with subacute cutaneous lupus over two years ago. I referred to a doctor who is 'interested' in skin conditions he is not a dermatologist (along with Wendy), this chap would come up with statements like 'it's your age' not very supporting or understanding as I don't think he knew anything about lupus. Out of frustration I asked my GP to re-refer me to rheumatology as I not only had SCLE, but secondary sjorgrens and raynauds and felt when I discussed my symptoms there was nothing he could do for me as I was not covered in a rash... Going back to rheumatology was not great as those who have followed Wendy's ongoing issues with them and this was the same rheumatologist. Wait and see I thought. In the end she took lots of tests and now seems to be focusing on my osteoporosis instead of the lupus. I did want an update on my bones, but I thought I would go back to the osteoporosis specialist in this NHS (who I seen a few years ago). Guess what she does both rheumatology and osteo in this county. My problem when asked about tiredness/fatigue, discussed my flares and high blood pressure and lots of other issues she never said anything, I assume we may pick it up after my blood tests. No. She gave me a leaflet on Azathioprine and one on Methotrexate and off I went.

So back my forum friends - I work full time and usually rest on the weekends when not feeling great (bed all day). Lately, I finding it hard to get up and just feeling fatigue, yawning, dragging and heading straight to bed when I get home, now this maybe the glorious light we are having, I hide as much as possible and work is UV protected. I was wondering if taking Azathiorprine or Methotrexate would help? I am already on hydroxychloroquine which has been good till now. Is it that I need a reality check ie follow the spoon theory and I am asking my body to much to work and still do things on the weekend? or at night? I read about fatigue in past posts and no clear answers other then caffeine can't hurt...I know I am tired as I am getting styes in my eye and sores in my mouth 'thanks sjorgrens' and also getting headaches.... I am really juggling and struggling would like to understand if there are any other options? ML

[Wendy39]

Hello. I've been trying to text you today but having problems with signal at home! Sorry. I hope you get some useful replies. Interesting the difference with our care even under the same health board - last year a dermy in Carmarthen clinic told me methotrexate was not an option open to me with SCLE! Then, you're offered it by Rheumy who basically tells me with SCLE I'm not her responsibility, I'm under Dermy control. She must like you and believe you if she's offered you more than hydroxy. I was given the choice of MMF and Aza by my Knight Dermy last year. I opted for MMF. But on Friday Dr Kaul had other options and mixes of different drugs too. Looks like I'll be trying Mepacrine. Fancy making my next trip to London with me? Do they do two appointments for the price of one? Ha ha. Let's see what others come up with. Speak soon, Wendy x

[Wendy39]

guysandstthomas.nhs.uk/reso...

Information on mepacrine.

X

[Lupiknits]

No advice or experience maggielee but am sending a hug x

[maggielee]

Thanks Wendy and lupiknits. Just to say Wendy that it may be that your complaints about your poor treatment reached her by the time I saw her and why the battery of tests i suddenly had, also having a few autoimmune problems she never diagnosed made her think. She still didn't talk to me about autoimmune at that appointment, she examined me, but never really discussed dealing with flares etc. She wants me to see rheumy nurse to discuss shots for osteoporosis IV zoledronic acid....the nurse told me that she dealing with osteo as well and seems to have a keener interest in it then lupus surprise surprise... ML😀

[Hidden]

As briefly as I can because fingertip pain is bad again. Fatigue is a huge part of Sjögren's - even more, so my rheumy and endo have both said, than other CTDs such as Lupus and RA. And this applies to secondary as much as primary. I've always been an insomniac and always been a low energy person physically. But over the past six months the fatigue has been in a different order altogether.

info.sjogrens.org/conquerin...

Re Aza or MTX- I have taken both - MTX for 2 years and Aza for only 3 weeks. Both can be extremely effective if Hydroxy alone isn't enough. Both are equally likely to cause side effects/ not be tolerated and both are equally likely to help you a lot. They are more aggressive treatments than Hydroxy but, on the plus side you will be very well monitored on either. At the end of the day lots of people take both of these drugs and do very well on them. I didn't, no Hydroxy or Sulfasalazine but I'm doing fine now on Mycophenolate. How each of us react to any of these drugs is completely unpredictable. Sorry if this doesn't help too much but it's all I can offer I'm afraid.

Hugs, TT x

[Hidden in reply to Hidden]

Ps just spotted this on a UK Sjögren's FB page - thought it might help your decision a little perhaps?

medscape.com/viewarticle/82...

I can't make link work for me so have cut and pasted some of it here - gist is that Hydroxy may work well for some with RA and Lupus but it doesn't help with Sjögren's fatigue at all other than as a placebo. For myself Methotrexate worked well for RA and neuropathic pain and Hydroxy did nothing much for Fatigue but helped with pain and lowered inflammation levels. But then so did steroids and ibuprofen.

As you probably know my main diagnosis now is Sjögren's although this might change.

"News & Perspective

Sjögren's: Hydroxychloroquine No Better Than Placebo

Neil Osterweil

July 15, 2014

A drug commonly prescribed for the treatment of primary Sjögren's syndrome was no better than placebo at relieving symptoms of dryness, pain, or fatigue over the course of 24 weeks, results of a randomized clinical trial show.

At 24 weeks, 17.9% of patients randomly assigned to receive hydroxychloroquine (Plaquenil, sanofi-aventis) had a 30% or greater reduction in symptoms on at least 2 of 3 analog symptom scales compared with 17.2% of patients assigned to receive a placebo, report Jacques-Eric Gottenberg, MD, PhD, from the University Hospitals Strasbourg in France, and colleagues.

"In the present study, hydroxychloroquine did not demonstrate efficacy for the main disabling symptoms — dryness, pain, and fatigue — of primary Sjögren syndrome compared with placebo," the investigators write in an article published in the July 16 issue of JAMA.

Although hydroxychloroquine, an immunomodulating agent, is the drug most frequently prescribed to treat the symptoms of arthralgia, myalgia, and fatigue in patients with Sjögren's syndrome, evidence supporting the practice has been sparse, Dr. Gottenberg said in an interview with Medscape Medical News.

"We lacked a randomized controlled trial of [hydoxychloroquine]. We all use this drug very often, and sometimes it works for some of our patients. We wanted to design a study to demonstrate it was working. The result was negative, but we can imagine in some subsets of patients this drug can still work," continued Dr. Gottenberg.

Patients with synovitis or purpura associated with high serum levels of immunoglobulin G may be most likely to benefit from treatment with hydroxychloroquine, he said. The investigators were unable to determine a skin benefit for hydroxychloroquine, however, because only 3 study patients had purpura, and all 3 were in the placebo group, Dr. Gottenberg noted."

[misty14]

Hi maggielee

Something that might help you decide between Methotrexate and Azatbioprine is that MTX is specially good for the arthritis. Your Rheumy should really have talked to you about them not just hand you info as they are used for different problems in lupus!.

Hope that's helped. They both need regular blood tests as well. Good luck for your decision, not easy!. X

[maggielee]

Many thanks for feedback...took the day off to rest something I have only a few times (taken sick) and only in the last few weeks, use my weekends and holiday for rest catch up... Rheumy is not great. The hydroxy helped with initial symptoms and got my spreading under control so I can count my blessings there, may have to go back to London bridge to get proper support....will rest and read...ml

[maggielee]

Twitchytoes had a read of the articles, thanks again. I think that the knowledge here about secondary autoimmune is not taken as a problem...I need to see if I am flaring in a different way then normal (for me)... Good to learn more about the meds and I am weary if I have to take more meds, but still feeling wiped out ....can't work like this or help the family at home... Hope u feel better ....hug ml