new member with reactive arthritis

[Guest guest]

Hi,

I was diagnosed about a year ago with reactive arthritis. I am supposed to be

taking 20 mg of methotrexate each week. I backed off of it recently because of

an injury (long story) but plan to go back to that level soon. I also take Mobic

every day, mostly for this plantar fasciitis which is somehow related to my

arthritis.

I came across this group while I was looking through , never heard

of it otherwise.

My question is: Is there a face-to-face support group for people with reactive

arthritis and related illnesses? I don't know much about the arthritis

foundation, I kind of assumed the activities are geared toward senior citizens

and I am 49.

The reason I ask is I am frustrated right now because I can't do the athletic

things I used to do or go outside in full sun, etc. When I take my full dose of

methotrexate I actually feel pretty good, unless I overdo activities.

Meanwhile some very stressful things are going on with family. I would just love

to spend an afternoon riding my bike like I used to, but my knees and ankles

won't let me and I am afraid of being boiled alive by the sun. I just hate

feeling like I'm trapped.

Thanks for any info,

-- Kay

[Guest guest]

Hi,

I was wondering why you can not go out in the sun much? Tom

>

> Hi,

>

> I was diagnosed about a year ago with reactive arthritis. I am supposed to be

taking 20 mg of methotrexate each week. I backed off of it recently because of

an injury (long story) but plan to go back to that level soon. I also take Mobic

every day, mostly for this plantar fasciitis which is somehow related to my

arthritis.

>

> I came across this group while I was looking through , never heard

of it otherwise.

>

> My question is: Is there a face-to-face support group for people with reactive

arthritis and related illnesses? I don't know much about the arthritis

foundation, I kind of assumed the activities are geared toward senior citizens

and I am 49.

>

> The reason I ask is I am frustrated right now because I can't do the athletic

things I used to do or go outside in full sun, etc. When I take my full dose of

methotrexate I actually feel pretty good, unless I overdo activities.

>

> Meanwhile some very stressful things are going on with family. I would just

love to spend an afternoon riding my bike like I used to, but my knees and

ankles won't let me and I am afraid of being boiled alive by the sun. I just

hate feeling like I'm trapped.

>

> Thanks for any info,

>

> -- Kay

>

[Guest guest]

Methotrexate makes you more sensitive to the sun. I did OK last summer with

sunblock, but then I was reading something on the Internet this week about a

lady who didn't know about the side effect when she first started taking the

drug, and then she went outside all day and her skin peeled off. Gross!

> >

> > Hi,

> >

> > I was diagnosed about a year ago with reactive arthritis. I am supposed to

be taking 20 mg of methotrexate each week. I backed off of it recently because

of an injury (long story) but plan to go back to that level soon. I also take

Mobic every day, mostly for this plantar fasciitis which is somehow related to

my arthritis.

> >

> > I came across this group while I was looking through , never

heard of it otherwise.

> >

> > My question is: Is there a face-to-face support group for people with

reactive arthritis and related illnesses? I don't know much about the arthritis

foundation, I kind of assumed the activities are geared toward senior citizens

and I am 49.

> >

> > The reason I ask is I am frustrated right now because I can't do the

athletic things I used to do or go outside in full sun, etc. When I take my full

dose of methotrexate I actually feel pretty good, unless I overdo activities.

> >

> > Meanwhile some very stressful things are going on with family. I would just

love to spend an afternoon riding my bike like I used to, but my knees and

ankles won't let me and I am afraid of being boiled alive by the sun. I just

hate feeling like I'm trapped.

> >

> > Thanks for any info,

> >

> > -- Kay

> >

>

[Guest guest]

Hi Janette,

I looked up the Spondylitis Association meetings. The closest one would be in

Columbus, OH, but it appears it might not be active now. I will look again,

maybe there is one I could visit on vacation.

I'm not sure how desperate I feel to go to a meeting. I guess I just feel, on

the one hand, grateful it is not a worse disease. But bad that all of a sudden I

seem to have lost a lot of ability, and the doctor doesn't think the disease

will go away.

-- Kay

[Guest guest]

Hi ,

I am the type of person that once I start feeling better, I think I don't need

the medicine anymore. I have skipped 3 doses of methotrexate and I am noticing a

lot of swelling, inflammation and pain, kind of like what I had a year ago.

I really would like to talk to the doctor about whether other drugs might be

better for me. I did try a different drug initially, and I was allergic to it. I

have a couple of other drug allergies, which does make me hesitant to switch for

the sake of switching.

The reason I might have developed reactive arthritis is because of some

illnesses from several years ago, one was a very bad case of food poisoning.

Weird that it would take so long for ReA to develop, but the doctor says that

might well be what messed up my immune system.

Maybe I will at least check out physical therapy. Never have tried that, but

maybe that is all I need in addition to my current medicines.

Thanks for saying you understand.

-- Kay

[Guest guest]

Mostly last summer I felt very tired, exhausted from the heat while taking

methotrexate. Thus far no side effects, but it has been a very rainy spring.

-- Kay in Ohio

>

> Tom,

>

> One of the many lousy side effects I experienced with methotrexate is a killer

migraine headache if you go out in the sun.

>

> Janette in Indiana

>

[Guest guest]

Hi Kay

 

Where do you live?  I live in Akron, OH.  Up till recently, I was working full

time.  Now I work part time and get every Friday off. 

 

I am like you - I am also very hesitant about taking Methotrexate because of the

side effects, and I also have quite a few allergies to medications. 

Fortunately, my symptoms are mild enough that I don't need to take them all the

time.   

 

As Priscilla said, you are among friends here.  If you need a shoulder to cry

on, or someone to talk we are always here.

 

Who's your doctor?  I go to Dr Zevallos at the Crystal Arthritis Center.  He

seems pretty thorough.

 

Adhikari

Akron, OH

 

  . 

 

 

From: MK <ontopuhduhvoild@...>

Subject: Re: new member with reactive arthritis

Date: Thursday, May 26, 2011, 10:59 PM

 

Hi Priscilla,

I live in Northeast Ohio, which means I can get to meetings or see people in

Akron, Canton, Cleveland or Youngstown pretty easily if needed.

Yeah, I hope I didn't sound dismissive of the Arthritis Foundation. All I've

really tried is an aquatics class at the YMCA and it was all old people. I like

old people, but...

As for church, I am kind of on again, off again. I work evenings and I am really

pretty sleepy at 9 or 10 in the morning. Occasionally I go to informal church

things that are held on my days off!

To tell you the truth, I am not sure I can answer that question of whether I

have a good doctor. Sometimes she will spend a lot of time with me, other times,

she just checks me over pretty quickly, and I never seem to be that sick when I

am in her office, at least not since my first couple visits. My pain is usually

not that great. It seems like all we are doing is managing symptoms. If I'm not

having symptoms then all is well? Well, not really, because the medicine is so

strong!

-- Kay

[Guest guest]

Hi ,

I also live in the Akron area.

I am hoping to resume some sort of methotrexate schedule this week. I stopped

taking it because of an injury I received -- don't want to get into the details,

but I was worried about infections, ability to heal and complications. And every

time I have a cold, I stop taking it. It is so annoying to have to worry about

getting really sick because of the immune suppression.

But anyhow, the methotrexate does seem to help a lot, and I don't notice a lot

of side effects. I'm looking forward to going back on it now.

It was hot today and I did feel sickly, and I never know if things like that are

because of the medicine or the illness. I was able to go swimming indoors, so

was thankful for that.

I go to the Arthritis Clinic of Stark County, Dr. . I guess as long as

I'm doing OK I will continue to go there.

Thanks for the invitation to talk. I'm OK for the moment!!

-- Kay

>

> Hi Kay

>  

> Where do you live?  I live in Akron, OH.