enthesitis and natural treatments

[Guest guest]

I was just diagnosed a few weeks ago with PA. I am 24 next month.

About a year ago my feet started hurting, I walked for a living so

everyone chalked it up to that. I have spent the past year unable to

do my job, going from doctor to doctor trying to figure out what the

heck was wrong with my feet. I knew it was achilles tendinitis but no

one could tell me why nothing I was doing to treat it was making

things any better. In fact they just got worse and worse where now I

am at the point of not being able to stand for more than 5-10 minutes

at a time. I have arthritic changes in my lower back, my ankles, my

knees, and my hands, I have had pain in these areas since I was an

early teen but always thought it was from being so active. I have

noticed all the aches and pains everywhere else have gotten worse over

the past year but I chalked that up to not being able to be active

with my feet being so bad. I finally got into see a internal med

specialist who said it was some sort of autoimmune disease but wasn't

sure which one exactly as so many cause enthesitis. I had had mild to

moderate psoriasis off and on until I was 16 but never thought to

mention...why would I right? My feet hurt why would a skin problem 10

years ago have anything to do with that? HAHA Anyway I started looking

around at autoimmune stuff and saw the link to psoriasis and my doctor

just about fell off his chair with excitement that " he " had figured it

out. I was lucky enough to get in to see a rheumy shortly after, he

has prescribed NSAIDS and methotrexate which I was really overwhelmed

about so he has given me a few weeks on just the NSAIDS, (which havent

done much for me in the past) before they start me on the metho for

me to adjust. Sadly I was kinda relieved to get diagnosed and actually

know what is going on and have a plan, however I am quite unnerved

with with the plan of heavy narcotics. I am desperate to get my feet

to settle down, I have done every conservative treatment out there and

I know that activity is very important in staying mobile with the

arthritis everywhere else. Anyone out there with sever tendinitis from

the PA? I am not really keen on the methotrexate idea still, my doctor

says it is important to be aggressive as early as possible to limit

the damage. I get that but would love to try some more conservative

therapies before starting on drugs who have warnings that start off

with blood cancer and liver failure...what happened to plain old

nausea and fatigue? Oh right those are on there too. (I deal through

sarcasm) Anyone have any luck with any natural treatments?

Thanks for any insight anyone could give me... hope all are well.

[Guest guest]

Hi

I am 36 and have a pretty similar history to you. The real pain didn't start

for me till later though. I am also very leery of methotrexate. My first Dr put

me on prednisone, then said she was going to move to methotrexate. I ended up

moving and my new doc doesn't like metho. He put me on sulfazine and I am

weening off prednisone. It took 6 weeks for the sulfazine to start working, but

it is ok now. I miss running and stuff, but still walk as much as I can, but

it's not enough.

cheers

T

[Guest guest]

Welcome, -

The only treatment proven to slow or stop the progression of PA are

the DMARDs (disease-modifying anti-rheumatic drugs) including

methotrexate and newer biological drugs. The risks you mention are

more likely to occur in people being treated with methotrexate for

cancer. We take it at a much lower dose. Your liver numbers will be

monitored monthly and you will be stopped quickly if it begins to

adversely affect your liver. MTX is an old drug that has been used

for over 30 years and its effects are very well understood. I

consider it a pretty safe drug.

Many scientists and physicians are not convinced that the risk of

lymphoma comes from the use of the drugs. It is well known that

psoriasis itself increases the risk of lymphoma significantly (even

if not treated at all!) and they suspect that the very slight

additional increase in lymphoma in patients taking the biologicals is

due to the fact that those of us on the drugs tend to have the worst

cases of P, including PA.

The fact that you already have arthritic changes in many joints (I

assume visible on x-ray) would make me very wary of delaying

treatment with these drugs. Any damage done to the joints is not

reversible. I consider the crippling destruction of my joints to be

a pretty serious " side-effect " of not treating with drugs - worse

than the slight chance of developing lymphoma.

I used MTX, but had to quit because of the liver, which quickly

recovered by the way. Now I take weekly injections of Humira. I

also take some supplements, eat a mostly vegetarian diet, etc.

However those measures are to supplement, not replace, the drug

therapy! I'm not willing to wait until irreversible damage is done

to my joints and connective tissue.

By the way, none of the meds you've mentioned is a narcotic.

best regards,

sherry z

[Guest guest]

I was a regular runner. You can still exercise but must change your

habits. Now I use a stationary bike or swim. Plus stretching

exercises. Excellent choices but not what I prefer - however, we must

protect our feet.

The tendinitis has definitely improved, along with the joint pain, with

taking Humira. Still, I have to protect my feet by not walking much

more than 15-30 minutes at a time, never jogging or running, not

standing more than about 15 minutes at a time, etc. I don't like it,

but it's a fact of my new life with PA.

best regards,

sherry z

>

> I know that activity is very important in staying mobile with the

> arthritis everywhere else. Anyone out there with sever tendinitis from

> the PA?

[Guest guest]

Use the Methotrexate! I thought I was reading my life story reading your story.

I take Methotrexate, and it works better then anything I tried. I am a 52 year

old male and have had this for 20 years. I've tried everything.

I still suffer with feet pain and joint pain, But I feel a little better. As for

the cancer and other side effects, don't worry about it. You would need to take

a hell of a lot more then what your doctor will prescribe.

SjL SjL <sjl55418@...>

[Guest guest]

Hmm just googled narcotic and learned the true meaning. Thanks....

Thanks all for the info on Metho, its easier to focus on the negative

when your swimming in fear. Good to hear some positives.

meganjbolen " <meganjbolen@...>

[Guest guest]

- I've been in this group about 2 years. We all started the same

way - " I don't want to take strong drugs " - but as I learned more about

the disease itself and about the drugs that treat it and as my own

situation deteriorated while I messed around with diets and the slow

process of getting to the " good stuff " - I realized this is a real and

potentially serious disease whose side effects (joint destruction) are

as bad as or worse than the side effects of the drugs. Many other have

trod the same path you and I have. Some people are still risking their

joints in hopes that some natural healing method will " cure " them. I

personally don't think that is wise - but it is a decision everyone has

to make for themselves. My life has greatly improved in the last year!

best regards,

sherry z

--- In , " meganjbolen "

>

> Hmm just googled narcotic and learned the true meaning. Thanks....

[Guest guest]

Tendinitis is my major symptom, and it can occur anywhere in my body,

but it started in my Achilles tendons. My rheumy says that PA causes

inflammation where tendons and ligaments attach to bones, and that

certainly describes many of my symptoms. I find that regular massage

is very helpful, as well as staying active. However, I notice that, if

I have been relatively inactive for a week or two and then exercise,

it takes me longer than normal (before PA) to recover from the fatigue

and aches and pains. Right now I've been off all DMARDs and take an

occasional dose of ibuprofen for pain. I feel I am very lucky to have

a good remission. I am married and in my early 60s, with a husband who

is almost always healthy. He has no tolerance for or interest in the

fact that I have a serious disease, so I feel very lonely. Finding

this group has been great.

Jackie

[Guest guest]

Jackie,

there is an exercise you can do to stop the heel pain. If you have stair this

is what you do:

stand with both feet half way on a step and the bend upright forward. no

bending knees, let your heel drop down and your toes point up., hold this for

the count of 20. do five of them every day and the pain goes away. I had the

same pain and since I do this the pain has disappeared. the phys. therapist made

me do it.

hope this helps. stay well.

Eva

[Guest guest]

Thank you all for the replies, they have been very helpful. I am going

to give the metho a try, I think I just needed a while to adjust to

everything and the idea of it all. Having people with the same

situations and good results is also more comforting.

As far as the heal pain (tendinitis) I have found nothing to relieve

this in the slightest over the past year, I have done every

recommended stretching program, had 6 months of physio, rest, rubs,

nsaids, massage, and nothing made a lick of good. I just started on a

higher dose of Nsaids that seems to helping a bit but my stomach isnt

tolerating the increased dose too well. I see my doc in 2 weeks and

will start the metho then, hopefully that will get them to turn down a

little.

Thanks again all, I am really glad I joined this forum, I am find it

is hard for people to understand something they cant see, so having

people that know what this feels like, both physically and

emotionally, is wonderful.

[Guest guest]

Just a reminder.

Sulfazine works quite well for some (me) and the side effects are not too bad at

all. I weened all the way off of prednisone, and am doing quite well.

cheers

T

[Guest guest]

I'm off prednisone also since I started remicade. Of all the drugs

available to treat arthritis I think prednisone is the worst for your

body. The long term side effects are horrible. Yeah it treates the

pain, but not the cause and you can continue to have degeneration in

your joints. I'm also on methotrexate and have had no side effects

other than some fatigue, which is very common and easy to deal with

especially if you take folic acid. I think people should be way more

scared of prednisone than methotrexate. Good luck.

>

> Just a reminder.

>

> Sulfazine works quite well for some (me) and the side effects are not

too bad at all. I weened all the way off of prednisone, and am doing

quite well.

>

> cheers

> T

>