Re: Re: New to the Board... some questions...

[Guest guest]

Theresa:  I don't think there is any connection between MTX and NSAIDs. 

However, my rheumatologist " skipped over " MTX and put me on Enbrel as soon as I

was diagnosed and the insurance company approved it.  That was just about 18

months ago and I have been virtually symptom free for over a year.  It took

about 2-3 months for me to get the full benefit of the drug, though I noticed a

big reduction in swelling literally overnight after my first injection.  The

pain relief came more slowly; in fact, so slowly that I hardly noticed it on a

day by day basis. Then suddenly one fine day, I realized I didn't hurt anymore

and I could actually go up and down stairs without crawling!!!!  I was a bit

skeptical and worried about Enbrel - as I think everyone is-  before going on

one of the biologics; but I talked it over not only with my rheumatologist but

also consulted with my internist (who is very common sense and keeps up to date

with everything) and my

orthopod.  All agreed that of the 3 treatment options available (prednisone,

MTX and the biologics) the biologics were best and their risks were quite low

when measured against the relief they provide. 

Each of us has to make our own decisions in consultation with our physicians;

but - as others have cautioned - doing nothing is NOT an option because the risk

of irreversable damage is simply too great.   

 Joanna Hoelscher

[Guest guest]

Theresa:  I've never really looked for those kinds of statistics.  Maybe this

would be a really good question to ask your doctor.  However, the best evidence

(for me anyway) is reading the histories of some who participate in this support

group who - unfortunately - went for years, usually thru no fault of their own,

without being diagnosed.  Some have suffered really terrible damage, it seems,

as a result.   I am very fortunate in that I am older and I was diagnosed within

six months of developing my first symptoms - primarily because I was

undergoing rehab after shoulder surgery and my physical therapist noticed a

marked difference in my body after I had a stupid fall around the house in which

I really banged up my ribs.  She started feeling inflammation that just wouldn't

go away and finally said she was convinced I was developing a systemic

inflammatory disease and I needed to see my doctor. 

 

It seems to me that the younger you are when you develop this disease (or for

that matter, any auto-immune disease) the worse it can become - maybe just

because you have a longer time to live with it!  Again, I found the thought of

going on Enbrel very scary; but at the time, I felt so awful and was so unable

to function normally that I was ready to try anything - particularly since all 3

of my doctors agreed that for me Enbrel; was the proper course of action.  My

internist shared with me that she had 12 patients on this particular drug and

one had developed a life-threatening infection.  However, she was hospitalized

and went off Enbrel immediately; the infection cleared up and - despite what

must have been a pretty scary experience - she went right back on it.  My guess

is that once you're on a DMARD and begin to feel better, you will not give those

risk factors a second thought.  You simply have to be cautious and at the first

sign of

infection call your doctor.  I have been one of the lucky ones who has not had

even so much as a cold since I started on Enbrel 18 months ago.  Up until then,

I'd been pretty healthy but every winter got an upper respiratory infection that

seemed like it would last forever.  I haven't had one since starting on the

drug.  Even my winter-time allergies have gotten better!  

There is a wealth of material on PA on the web.  You owe it to yourself to learn

as much as you can, both from those who are sharing their stories with you but

also by doing your own research and becoming your own best advocate.  Good luck

in whatever choice you make.   

Joanna Hoelscher

[Guest guest]

Hi,

I have PsA, and I am on just Celebrex. My doctor said that if my

symptoms got worse and or if I had a fever then I am going to go on it.

I basically said that I was not ready for needles. He is not pushing

Enbrel on me. Also, it maybe that I had a history of fevers in the past

and He does not want to start them up again. So he would rather wait

until I have it. My fevers lasted a very long time. Its hard to shut

them off in some people.

[Guest guest]

:  is your doctor a rheumatologist?  If your doc is sure his diagnosis

is correct, it's really hard to imagine he's not doing anything to prevent the

damage PsA can cause.  Celebrex can help prevent pain but won't help prevent the

destruction of you joints that the disease can cause.  The biologics aren't the

only option, though for some they are certainly the most effective.   

It's interesting about your fevers.  Is there a cause?  Are they attributed to

some kind of infection and/or do you feel sick when you have them?  Maybe you

just have an abnormally high temp the way I have an abnormally low one

(typically around 96.4)!  

 Joanna Hoelscher

[Guest guest]

Hi Joanna,

I feel my disease is mild. The doctor is a rheumy , in fact one

of the best. It may be that he does not want to make worse my situation.

Perhaps he is afraid of triggering a fever. I have not had one in many

many years. The long lasting kind. In addition I do have skin problems.

The chronic uticaria seems to help prevent speedy healing. I am on

Fexofenidine (antihistamines) H2 blocker Doxepin, and Cymbalta, and

Celebrex. Vitamins and Tylenol as needed. This all seems to work. The

only problem that is significant is that I have knees that bother me.

Traveling muscle pain and Asthma. My Doctor prefers me to be sicker to add the

major stuff. It makes sense to me. I have a slooooow disease process. I had

constrictive pericarditis when I was younger and that was with fevers and

uticaria and joint pain. Each day is unique as you know it hurts somewhere. I

do exercise and much of the times my knees are stiff following the NuStep

exercise for 30 minutes.