Kickas.org Forums Treatments, Drugs and Alternatives AS Pharmacy Sulfasalazine is working but making me miserable

I started out with foot pain and immediately got put on orthopedic inserts that are plastic. They are $15.00 and I have to buy them from my foot Dr. every 3 months and do the Achilles stretch and since I sleep on my stomach, I hang my feet over the bed so they aren't in the tip toe position which is bad. I had to wear my tennis shoes all day with the inserts. If not my enthesitis will flare. Right now I have it in both feet and once my shoes come off, I have a compouding cream to put on them. I use my walker at night to to take some of the weight off of my feet and my back.

I have always been on the top dose of Sulphasalazine. My U.C. never came back. I'm blessed with that.

pea, I am happy something works for your feet. I have had for pain my whole life from fallen arches and all inserts ever did for me was cause more pain so I wouldn't even consider them if my dr brought them up, which he hasn't You are very lucky that they help you.

I don't have any sort of creams, my Rheumatologist hasn't brought anything up and I am skittish about doing anything on my own because, at least for me, anything I try to help one problem just causes another like with the Sulf medicine and migraines, Motrin and UC. I wonder why he hasn't mentioned any creams, maybe he figures less is more- don't know.

the Rheumatologist would have loved for me to jump into the high dose immediately but I knew from experience that I could never live with the daily migraines. the joint pain hurts and makes me sad but the relentless migraines are downright crippling and made me very depressed so we are going to try and see if going slowly works for me. my fingers are toes are all crossed . I figure this disease isn't going anywhere and I'm in a fairly stable state and can live with things as they are at the moment so no need to rush and blow through what may be my golden ticket.

Living with 15 migraines a month since i was 10 has taught me to be patient with myself, it is what it is and pushing never works - all it does is increase stress which increases pain and generally leaves me feeling exhausted. all I want is my life to be livable, not perfect, I don't expect to be like other people, I just want to be able to sit still in my own skin and be ok with that, know what I mean.

Luvinlife,
I do know what you mean. That is what all of us want. What works for one, won't for another.
It sounds like you might be sensitive to some med's. I had a huge bout of migraines in my early twenty's. I still have them but only if my neck gets really tight and with 3 bulging disc in them, it gets tight every couple days. I do the Imitrex shots and get relief within 10 minutes. I know some that can't take it and for some it doesn't work. So glad that it does for me. No coffee will cause one and no food by 2:00 definitely! Will he let you go off of the sulpha. So many can't tolerate it and then they usually try NSAIDS which is hard on everyone's stomach. I don't even know what they use anymore for U.C. Back when I was 28, that is all they had to treat U.C/A.S. Now they have the TNF blockers which really helps but then again, some can't take them. It does get very frustrating.
My pain specialist has given me Voltaren Gel which is a NSAID but doesn't hurt the stomach. They work well on my fingers and neck and collarbone. The compounding cream given to me by the same Dr. for A.S. pain works a little better then the Voltaren Gel. It is a mixture of nerve pain meds, muscle relaxers, NSAIDS and a numbing topic. She had this at her office and I got a refill from a Compounding Pharmacy. You might mention it to him. There are also Lidoderm patches that go down 3" only. You can wear it for 12 on and 12 off. It is Lidocaine like they use in your month. There is also Flector patches and they work in the similar fashion. These are not the narcotic patches. So there is a lot to offer these days. Glad you found the board. Lots of information here.

Thanks for the recommendations about the gel and lidocaine, I think I will call today and ask. I can't take anything like that orally but on the skin might help

I didn't get to call yet because other things have sucked up all my time, PTA, 2 teens, sports and injuries plus appliances breaking down -uggh, evleryday life. i I am going to see the GP tomorrow as a followup and to ask about a temp handicap plate to use on the bad days when I can't really move well and will ask about the cream then, i hope i get them. These days I seem to have lots of flares and the pain is concentrated deep deep deep in my left hip and right Achilles tendon (injured from a car accident & only thing on left side) so I upped the tablets again today in the hopes it will help. I am now spacing it as 1 in the am with my coffee, 1 around 1pm with lunch and one at dinner time. fingers crossed, we'll see how it goes.

Just wanted to pop in to thank you for mentioning the voltaren gel. I just picked it up from the pharmacy and it is awesome! I do t know what it would do with the worst harsh pain but the more mild constant ache in my heel is gone and I only put the gel on about 30 min ago. Thank you thank you thank you! Now I am not limping:). Yay!

Continuing chronicle:

The migraines got worse but I didn't want to stop the medicine so after 7 days of migraine the neurologist tried a steroid that didn't work but last Thursday I got 2 shots of toradol followed by occipital nerve block shots to my head and it worked for a week. Fingers crossed that I can get the Botox shots soon and be able to tolerate the AS tablets

Good news Luvnlife, I am so happy that you are getting some relief. Every little bit helps doesn't it? Thank's for letting me know.

Sulphasalazine usually only helps peripheral AS not spinal.

It does nothing for me but give me a very bad headache. You might try the enteric coated ones those might help with HA.