Re:What can I expect?

[Guest guest]

Dear Hillhick,

Sorry I don¹t have your name. I remember when I was first diagnosed and I

spent so many days, weeks, and months trying to figure out what drugs to

take to get my life back. My advice and this isn¹t to be negative is to do

all of that, but to also not put off anything you have planned to do for the

future. It¹s sounds crazy, but one of my best friends talked me into a

cruise when I had PA and didn¹t even know it yet. I told her I wanted to

wait until I felt a little better and she said, What if that day never

comes? She said, we can do it physically now, so lets go. I¹m so glad I

went since I¹ve not been able to do that since. My husband stayed home to

watch the business and I wish now we had just closed it and he had gone with

us. I did take my youngest daughter, but my whole famiy hasn¹t been on a

family vacation since I got sick and I don¹t see it happening with me still

around. I also have a lot of other problems too, which make my case worse.

I have sleep apnea, Fibromyalgia, erythromelagia (a rare condition that

comes often from auto immune diseases, where your skin heats up, turns red

and burns like mad. I have it in my face, hands and feet.), diabetes, COPD,

and neuropathy. My life isn¹t a barrel of fun these days and I spend most

of my time just trying to get by day to day. I¹m on oxygen at night, but

somehow haven't¹ been able to take the Cpap machine that works for sleep

apnea. I¹ve tried several of them, but they all wake me up when they hit

the ramp stage.

Regardless of how negative what I just wrote seems, the best thing you can

do is stay positive and find the best rheumatologist you can find. It took

me 7 to just get the correct diagnosis. Then another 3 years to find a

medication I could tolerate, so by the time I found Arava, which works the

best for me, I have damage to almost all the bones in my body. So finding

the right doctor and the right medication is crucial. Not everyone wants to

take the risk of the biological drugs and they do have a lot of side

effects. But you want to slow down the damage as fast as you can. Also

remember that not everyone has the same rate of bone destruction or

progression of the disease. You also might have a mild case. So it¹s not a

death sentence and for some people it seems to be almost just a mild

inconvenient. For others it¹s much worse, and for a lot of them the

medication helps. The best thing to do is keep reading the posting on this

support group. I¹ve found a lot of people with PA seem to be really

intelligent people and most are really up to date on their disease.

You¹ll hear a lot about alternative medication and some people seem to get

some help from it and I¹m all for anything that helps as long as it isn¹t

too dangerous. A lot of time it comes down to taking risks with your heath

just to maintain the status quo, and as scary as that is, I for one think

it¹s worth it. I had bad reactions to both Enbrel and Humira and my lungs

still haven¹t recovered from the Humira all the way, yet I¹m willing to try

Simponi and I have it in my refrigerator as I write this. My only problem

is I¹ve had this gum infection since the drug arrived and there is no way I

can take it until the infection is gone. There is no easy answer.

One other thing that really helped me was going into pain management. I

think the sooner the better if you are having bad pain already. Normally

where there is pain, there is inflammation, and joint damage goes along with

that as well. They do give out pain pills, but not like candy and they have

other things to help you along the way. I was able for almost 5 years to

work on art glass until my hands got involved. Keeping your mind active is

extremely important and staying positive helps as well. If you can exercise

that helps to keep your joints from sticking so much and feeling like you

are stuck all the time. Pain management also helps in the fact that they

just deal with your pain, which so many other doctors, rheumatologists

included, often overlook. They hate to write a prescription for pain

killers just due to the fact that the FDA gets all over them if they write

too many narcotic prescriptions. Pain doctors are expected to write

prescriptions for narcotics so it¹s not a big deal with them. Also they are

just like any other doctor, you have to shop around. Be prepared to sign a

contract saying you will only get pain meds from them and will take a drug

test if they require one. They have to protect themselves from the real

drug users out there. Check around and see if you can find someone with a

good reputation and that other people you know go to. Normally they are

good with injection point therapy and many other types of pain relief

without just giving you drugs. Many of them have a local psychologist they

can recommend if you just need someone else to talk to or even talk to your

spouse about the changes in your lifestyle. So just look at a pain clinic

as another option. For me, they have saved my life many times.

I wish I had some better answers and I tried to answer you questions as well

and as honestly as I could, as far as my case is concerned. We are all

different on how bad this disease gets and what drugs work best for us. I

wish you luck in this journey and that your case isn¹t too severe. Feel

free to write me anytime, ok?

Good luck and I hope you have many pain free days ahead.

Take care, Fran Mishler

fran@...