SAPHO and Methotrexate
 

My 35-ish year old niece is really suffering at the moment from the symptoms of SAPHO.

Her spine is curving. She has trouble walking ... her feet are too painful. Her hip and shoulder joints are causing agony, as are most of her other major joints.

She has seen seen a variety of doctors with a variety of treatments. The last medication she was on seems to have helped, but now she's reached a plateau, and her disease seems to be spiralling down.

Her Rheumatologist has suggested a course of Methotrexate... a chemo-type treatment currently used in the treatment of Rheumatoid Arthritis.

Has anybody had Methotrexate for SAPHO?

or.....

Has anyone had Methotrexate for Rheumatoid Arthritis?

Can anyone tell me what my niece might expect, because all the literature we've been able to access so far tells us this is a very nasty drug, with very nasty side effects.

I'd appreciate any input at all ... thank you.

Hi Koala ~ I'm sorry but I don't know what SAPHO is. :confused: I probably should, but I don't. I can give you some info on Methatrexate tho, as my son was on that when he was beiing treated for leukemia as a child.

It CAN be a nasty drug, but it is monitored VERY carefully by the doctors, and rarely do you have much of a problem with it unless the doctor doesn't know what he's doing. And I doubt he would prescribe it if he wasn't familiar with it, so she shouldn't have to worry about it. The following are some of the side effects: Dizziness, drowziness, headache, swollen and tender gums, no appetite, red eyes, hair loss. These are the most common side effects but that doesn't mean she's going to get them all, or get them at ALL. They are just the ones that were most often reported.

There are more serious ones, but they are very rare and you don't need to worry about them. If anything DOES happen that isn't on this list, and you deem it to be serious, have her STOP the med and go to the hospital immediately.

I seem to remember that my son's blood counts would bottom out while he was on this too, but his were already seriously low anyway, so a normal person generally wouldn't have to worry about it. ;)

Best of luck and I hope your niece does well. God bless. Hugs, Lee :)

Thank you for that article pabb. I do understand what SAPHO Syndrome is because I researched it fairly well when she was first diagnosed, but I do thank you, and will forward that one onto her.

Thank you Leesa for your reply, and I'm sorry about your son's leukemia.

That article pabb provided explains what this syndrome is if you're interested. .

My niece and I have been reading about Methotrexate and the side effects sounds so scary....severe (possibly fatal) bone marrow suppression/leukemia, aplastic anemia, liver toxicity ... fibrosis and cirrhosis, ulcerative colitis, plus there's a fatal lung condition, and a possibly fatal skin condition on the list...... and that's not even mentioning the myriad of lesser side effects.

I'm sure her Rheumatologist knows what he's doing, and he will start her on a low dose if she goes ahead with it, but before she makes her decision she naturally wants to learn as much as she can about the medication.

my son was on methotrexate briefly for Crohn's Disease. He absolutely hated it and refused to take it again, no would he even consider some of the other similar meds the docs wanted him on

he has had tremendous success with anti-inflammatory diet and supplements and more natural ways of controlling the autoimmunity of Crohn's....but I realize his condition is very different from what your niece is dealing with, and he is also very hypersensitive to many medications because of his multiple chemical sensitivity

Thank you for that Chemar.

I can well understand your son not wanting to persevere with this medication, as even low dose Methotrexate can cause nasty nausea, as well as a multitude of other side effects. Odd that it's used for the treatment of Crohn's, yet it can upset the bowel so badly that it actually causes gut diseases such as ulcerative colitis. :confused:

My niece is a very sensible young lady, and I know for sure that any major decisions she makes are always well informed decisions. That at least I'm grateful for. Others may not be so vigilant.

She's read everything she could get her hands on about SAPHO Syndrome, and has researched all the applicable drugs ... including those suggested by her Rheumatologist, but not yet tried.

It pains me so to see how much she's suffering. She's a young woman with a young family, and she's very special to me. Unfortunately joint pain is ruling her life.

Every major joint in her body hurts .... even the non-major ones hurt .... and their inflammation makes walking, standing, and even sitting, so very difficult for her. Now her spine has become affected... with a growing curvature (or scoliosis).

She's a tiny little thing..... not overly tall, maybe 5'4'' ish, maybe 5'5" ... and she's very slender. To look at you'd probably guess that she weighs 105, maybe 110 lbs, but her doctor says she needs to lose more weight to relieve the pressure on her joints. If she loses any more weight, I'd be concerned for her health because she'd just be a walking skeleton.

But.... my niece is at her wits end!

She's tried so many different medications, so many different diets, and so many different treatments .... but the terrible joint pain is wearing her down.

She has decided to think about taking Methotrexate .....

Hence my post reaching out for all the help that I can get for her.....

Hi again ~ I certainly understand her pain ~ I have a deteriiorating spine, as well as severe osteoarthritis, so while the back/hip/legs are very painful, so is the rest of me! :eek: I do take opiates for pain relief, but am severely undermedicated as the doctors in this country are terribly afraid of the powers that be. The government has a bad habit of putting their noses in where it shouldn't belong, thus making it difficult for doctors to do their job.
Consequently, we chronic pain patients suffer needlessly because of thugs out on the street! :rolleyes: Go figure.

My heart bleeds for your daughter. I'm 61 and have had this since 38, but not as severe. I've been able to live a good life. Bless her heart, she's still so young! She's in the prime of her life, and should be enjoying it. :o It breaks my heart to hear stories like this. Please let her know that my prayers are with her and I will be praying for her ~ and you as well. God bless and take care. Hugs, Lee ;)

Dear koala 77

Sorry to read of your Neices sapho I too have sapho. I'm 37 with a six month old baby I would very much like to hear from you about your Neices treatment, has she found anything to help? I'm in Perth Aus. Did she try the methotexate? Sapho is so rare to read of someone a similar age with it has made me feel less isolated.

Welcome to NeuroTalk Manxy but I am so sorry to read that you too have SAPHO. What a nasty disease it is.

I have seen neice in the most awful pain and I wish there was some way I could take it from her..... Thankfully she also has periods of remission where her painis fairly tolerable.

Her rheumatologist has tried different medications but I do believe that Methotrexate is the one that has given her the most relief.

I will contact her on your behalf (we also live in Oz) and get her current treatmen regime for you. I'll get back to you as soon as I can.