Please help!

[aysha01]

Hi

I was recently dx with PA and my dr put me on Celelbrex. About 5 days into I started to feel sick during the day, nauseous and very off colour with increased muscular aches. I posted on here about feeling cold and fluey. Called dr who said stop celebrex for a few days and see if I feel better. Well yes, i do after not taking it last night. Am going to discuss the possibility of using Naproxen instead - apparently it doesn't have the same heart risks. An additional prob here is that I am also on an antifungal med that may be interfering. It is in the same family as another knownn antifungal that can interefere. The dr is aware of the antifungal I am on.

Anyway my question is I don't have pain from arthritis. I do have ache though and tenderness on my joints - particularly hips - and stiffness in other areas. What I wanted to know is do I need to be on a med if I don't have pain?? Or is it more a case of reducing inflammation to avoid joint damage?? I don't appear to have joint damage - just this ache and burny feel - and possibly bursitis in the hip area. I really don't want to be on this strong meds if I don't need them - but if it's too avoid long term damage I will have them. I am 33 and feeling like my decline has now started.. feeel so baadd. And I have no moral support here.

thanks

[Re]

aysha01 the reason for meds is to reduce inflammation to slow down or stop joint damage before it starts. you already have some pain and that is just the tip of the iceberg. it is good that you have been seen so quickly most of us it was later. I did not tolerate celebrex either, got severe chest pain and could not breathe pcp said it was just my asthma so he put me on it again. nausea, vomitting, chest pain difficulty breathing and then hives. ibuprophen or naproxin sodium are good and you can get them at almost any store. there will be others posting on this too so do not feel alone. I do not have a support group close by. the two that were semi-close are without leaders so the group is out to lunch so to speak, but, you have an online support group just like me it is all of us. we help each other and are good sounding boards. hang in there kiddo
Re

[ouchyk]

Ayasha,

I'm glad you found out what was making you feel so ill. I used nabuemetone (nsaid ) with good success for a very long time ( in conjunction with other meds ) I also used prevacid or prilosec to help combat stomach issues.

If your hips keep up you might want to ask your dr about cortisone injections they calmed my hip PA ( bursitis ) right down and almost immediately.

Everyone responds to medications differently and each one of us has an immune system that is as different as our personalities so it's hard to know what to do or what NOT to do...so this is where having a good rheumatologist who understands your particular case and wishes comes in to act as a partner in your healthcare.

Support is so important, having people who understand..education is too, if there is anyway you can get to a support group or education meeting I think you would might that helpful.

Hang in there,
Karen

[aysha01]

thanks so much for your responses. So much better today..after stopping Celebrex. It also flared my genital psoriais for some reason.

One question..not sure if it can be answered. Is my prognosis better, because I have found out about it in it's early stages?? Also when people say they found out late - why is this? Were symptoms not very severe, very gradual? Or not picked up by dr's? I get so scared reading about some of the people here who are using canes and are in wheelchairs.

[aysha01]

one more thing..thanks for the tip about the injections. I am going for an ultrasound and x-ray to confirm about the bursitis, and see the rheumy next week.

[ouchyk]

aysha,

You ask some difficult questions that I don't think anyone, including a doctor would be able to answer.

The good news is you have been dx early on and you are being followed carefully. I know I've typed this 137438 times to you already but I cannot stress it enough. Some of my PA friends have this rule, if it lasts for more than 3 days get it checked out..

My uncle " had " PA and I say " had " as he is in remission and has been for many many years now thanks to MTX. He had it in two joints, his finger is permanantly disfigured yet he doesn't care it doesn't bother him and he was considered mild. He had it for three years and that was it...boom...gone. His psoriasis on the other hand...geesh! it went hog wild on him... This remission I believe is a rare occurance but I do know of others who have PA that comes and goes..

I have a cousin who is in horrid shape with both P/PA, and he has crohns to boot.. my heart breaks for him when I see him, he's had this since he was 16, he's in his early 50's now, he's probably one of the more severe cases that I know about personally and I know a lot of fellow PA'rs. I fall somewhere in between the two, I'm not as severe as my cousin nor am I near as mild as my uncle and we are all in the same family ( genetically speaking ).

So even in the same families you have stark differences so you can imagine how difficult it is trying to compare one another to folks on a message board. or that you meet at an event/support group meeting, conference etc etc.

Most folks that I know do well with PA if they listen to their bodies carefully and follow up with their rheumatologists. Aides are just that, an aide to help when you need it and not everyone does.

Hang in there and let us know how your appt goes! If you do decide to get a cortisone shot you might want to follow up with some physical therapy. Keep moving too as well as you can, exercise is important for those of us with PA.

Karen

[aysha01]

Thank you OuchyK you have responded to a lot of my posts. I guess this is hard to judge. Everyone is different. I will take your advice about the moving part, and start exercising regularly..maybe an hour a day walking. Ihave not looked after myself these past 4 years.

I feel strange about my family. They don't seem to understand the gravity of this. I told my mum and she hasn't mentioned it again. One friend didn't even really say anything, and I cried on the phone with another friend (and it was good to let it out). My husband just yelled at me the other night to snap out of it and start thinking positive or things will go bad. Mmmm..I really feel I am in a dark and lonely place right now. I don't want to attend to anyone elses needs but mine either. I have a 3 year old child on the autism spectrum who needs and needs and needs. Indirectly I know the stress of managing her problems has done this to me. As has an unemotive husband. Louse L Hay says in her book about Healing your LIfe that arthritis stems from feelign criticised and unloved. That's certainly how I have felt.

Sorry for the agony story everyone..just reflecting. I feel slightly numb at the moment..and as I've said before so fearful. Meanwhile famly members are pressing me to have another baby...

[Re]

aysha01 tell your family to press some clothes and not you. try to give them all of the info you can find on pa. the more they know the better they can deal with it. stay strong. if you need to come here to vent non of us will mind we are all here for you
this link is just one of many that you can print if needed and give it to whom ever you see fit
http://www.rheumatology.org/public/factsheets/psoriatic_new.asp?aud=pat

[ouchyk]

Ayasha,

I just wrote the longest post on earth and it didn't take UGH darn computer.

Anways, Re is right, INFOMATION and EDUCATION for your family to try and have them understand and SUPPORT you!! www.psoriasis.org has a pull down menu or you can type " psoriatic arthritis " on the front page and it will give you tons of information.

While a positive attitude ( and lots of humor ) can be helpful. Louise Hays is totally off the mark and full of poop and obviously does not suffer from inflammatory arthritis.

PA is an immune mediated disease, it's genetic and for some a trigger can put forth the chain of inflammation events into motion. I never felt unloved or critizied by anyone and I have PA...

Try to do something good for yourself every day. Be kind to you. Be selfish and put yourself first. Take a nice long bubble bath, try a new food, buy some comfy slippers, sit by a fire..and throw that book in..what I am saying here is something just for you..not your child ( btw I hope you have support there! ) not your husband, not your family or your friends YOU.

Less stress is definately helpful, a positive attitude is helpful, humor is helpful but they are a small part of the big picture.

Acceptance of disease is not easy and part of that acceptance is going thru different stages ( for some ) somewhere on this section of the boards is a post by Lorisocal she has listed stages of grief that some can experience, you might want to give that to your family as well.

Please tell you doctor that your frightened I trust he will understand, my dr did...

Hang in there, it'll get better.

Karen

and PS please keep coming here for support there are folks who understand!