Is there anyone on the forum who has untreated RA/PA

dianel

I would love to hear from anyone who is in the same situation as myself. I cannot take the dmards offered because of reacting to them so badly. The last bad reaction traumatised me badly and I don't consider myself a wimp in anyway. I would point out that I know I'm in the minority (thank goodness) and that most people can tolerate this strong treatment. The Rheumatologist has more or less said "you're going against our advice -on your head be it - you know what you're risking" in spite of the letter that my doctor sent to explain how ill I had been after taking the drugs the last time.
It's looking as though I'm developing osteoporosis even though when I had a test about six years ago - before arthritis was diagnosed - they told me my bones were exceptionally strong for my age. I'm also to go for an appointment with a cardiologist because of an abnormal ecg. Is this all due to the arthritis or not? Of course I don't know.
Sorry to go on like this but I really don't know what to do for the best or what to expect and it does help to write about it. Best wishes to all, Diane.

woodbon

Hi, I don't have RA I have Oa, so things are different for me. Im sure someone who has your problems will be along soon and help you. Although, I can't help thinking, reading your post, that the answers you really want can only be given to you by a doctor. You are obviously worried about heart problems and thats understandable. How far its to do with RA is something else that a medic needs to talk to you about. I must be awful having to wait, I know i'm always trying to second guess whats going to be said!

I wish you good luck with your tests and the RA.
Love Sue

skezier

Hi Diane,

I have had untreated pa for a while, I don't know how long but it is now being treated, but only as of last month. I have thrown a few abnormal ECG's but I have other conditions as well.

Is there no treatment you can tolerate? It does seem unfair that you have just been told on your head be it. I have had oa for donkeys years and have been on antiflams and painkillers for almost as long and that has helped with the pa as it got in to my bones. I also wonder do you take HRT (Please use the synthetic ones not the ones that are derived from the horses) cus that is good at helping slow down the onset of osteoporosis.

I hope you can find something cus when this lot flared untreated back in march it really made me ill and its still not shut up yet. Take care Cris

vonski

Hi Diane

I have oa and something else but not sure what as yet, not gettting any treatment until they know.

Didn't your Rheumy offer any alternatives? I'm sure there must be something else you could try. It seems a bit unfair to say on your head be it, thought they were supposed to help.

Love
Vonski x

madness1985

Hi dianel,

Im currently an unmedicated ra suffer and its no fun is it? My problem is i have a heart condition (fallots) and so medz is hard for me to have plus my fear of needles & inability to swollow tablets .. oh joys of long term ill health. Im currently trying to get more blood for further tests so i wont be medicated for a long time! Have u lost alot of weight? become very pale? Im currently trying to get blood for an overreacted thyroid, diabeties & anemia! I have found regkar naps, hot hot baths do help. I hope your cardiology appointment goes well they are friendly people

Take care x

kathbee

Hi Diane

Are you on anything like Alendronate for your bones
as it is a protector against osteoporosis, taken once a week or is that a no no for you as well. Theres also Calcichew which is
a calcium to help the bones.

It must be really hard to be told on your head be it
kind of stuff. You didnt ask for this.

Have they tried different meds with you or are you put
off from your initial experiences.

I have RA and fortunate for me (although I hate the
concoctions I take with a vengeance ) I have been able to tolerate them with some side effects but not horrendous ones.

Perhaps the clinic can help you more, I hope they can
come up with something for you soon and that you
arent in too much pain at the moment.

Kath

dianel

Thank you all for replying. It's much appreciated.
Skezier - I've never taken HRT, but I know they think this helps prevent osteoporosis. Until I was diagnosed with RA/PA I didn't have a problem.
Vonski - Yes they have offered me several treatments but after attempting three and having horrendous side effects I just couldn't go through it again. The Rheumatologists are supposed to help of course but can't unless you do what they say.
Kathbee - I do take Calchichew. I'm having another bone scan and then they will decide whether to prescribe Alendronate. They have already told me that a lot of people can't tolerate it which is worrying. I do take co-codamol and diclonfenac which help with the pain somewhat. The disease has destroyed both my shoulder joints and my right knee is bone on bone - so for me to suffer this pain rather than the side effects may give you an idea.
I know I'm asking questions that no one can answer - i.e. how bad can it get without treatment because we are all individual, but just thought there may be someone out there in the same position. Best wishes to all Diane.

jeannie2

Hi Diane,
You sound like a clone of me! I've just nipped into the site but am on my way to visit my ma! Will put a message up when I come back. I've been unmedicated for 18 months.
Jeannie S