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Rheumy says I don't have RA but has sent a prescription for palquenil -I don't trust this man at all what is this drug help me decide what to do please

Hi Julie,

I've said this all along, my rhuemy wanted me to take plaquenil back in the days when I had palindromic rhuematism, which is a possible prelude to RA. I had a lot of the same sympoms as you had in the beginning. If you don't trust him though it's hard to advise you what to do. I didn't take it and I wish I had of back then, It would have controlled inflammation enough when I had travelling flares and it could have been years or maybe not ever that the PA would have turned into RA. Here I am today with RA.

Also, don't you have to go for baseline eye exams before you take that drug? I know that's what my rhuemy told me. Can you ask him why he wants you to take plaquenil, that may open things up a bit, he has to have a reason or suspect something? Trudge through Julie, you'll get there.

Jackie

Sorry forget to mention,

Plaquenil is an anti-malarial drug. It helps with swelling, pain and stiffness in your joints. It can mess with your eyes a bit, that's the reason for the baseline eye exam.

Thanks for getting back to me - i remember you saying about that before - this is horrible isn't it . The worst is I'm stiff and sore in the morning now but I've not had a 'flare' since friday so at the moment (touch wood) I don't need it for the pain- im more scared that my joints are being destroyed. http://www.rheumatology.org.nz/nz09008.htm

Julie have a look here, it explains about plaquenil. Why do you think your joints are going to be destroyed? ?because I thought that every time there is pain there the RA is eating away at the bone and cartlidge and tendons and stuff Julie, have a look at this url http://www.mayoclinic.com/invoke.cfm?id=DS00020. Use the search facility if the RA Page doesn't come up. Some informative reading there and some good explanatory pictures, I need those

Try not to panic about the pain. My hands are painful because they're swollen. I may be wrong but I don't think that every time your in pain it means that your joints are being eaten away! I find that rest is very important too!

Hope you are OK

As far as I am aware it is the inflammation that actually damages the joints and causes the pain. If you have been given something to control the inflammation I am tempted to say take it. But if you are at all worried then speak to your GP who can explain it a bit more. Hopefully the rhematologist has all of your notes and wouldn't prescribe something if you didn't need it. I think they are loathed to prescribe unless they really have to. As to why he has given you palquenil and said you don't have RA I don't know, it is certainly something you should question him about. He obviously thinks there is something that needs treating, he just needs to explain things a bit better (exactly the reason I moved rheumatologists!).

Keep us up to date I hope you get some answers soon.

Well the doc must think there is something there to treat if he gave you
plaquenil! I wonder why he's playing Secret Squirrells with the diagnosis. If
it's any comfort julie I've been taking plaquenil for about two months now
and I'm starting to notice some improvement: a bit less fatigue, and less
really bad days. As long as you have your eyes monitored for retinal toxicity
it's okay. Is there any possibility of changing rheumies? This dude sounds
about as useful as an ashtry on a motorbike.

lol, Chelsea....that is a good one. I haven't heard anyones uselesness quite as accurately as you have just done. Thanks for the laugh!

Jackie

Julie, I have been taking placquenil for three months. Absolutely no side effects and I am better. I can't say for sure it is the placquenil that is doing it. Julie, your stress is going to cause you to get worse. You have to calm down. Stress definitely makes the pain worse and causes flares. There are many people with ra. Not everyone has their joints destroyed. I have what they call aggressive ra and I plan on keeping my joints until a ripe old age - at least 99. I take care of myself and you should too. RA just makes you have to love yourself a little more

She gives good advise Julie. I think I'd want a better explanation as to why you'll be taking the plaquenil if he's convinced you don't have RA. What are you taking the plaquenil for? If it's for inflamation what's causing it?

I took Plaquenil years ago in conjunction with Sulfersalazine. It was added to Sulfersalazine after a couple years and it wasn't working as well alone.

I don't think it would hurt to try it. It might actually give you some relief.

Someone here once said (Sorry; can't remember who) they'd spent years chasing a dx. She still didn't have one, but that didn't matter to her anymore. The most important thing was that she was getting treatment that seemed to be helping her. That's what mattered most to her.....and in the end, I guess that should be what matters most to all of us.

It's not going to matter whether they label you with RA, PA, OA, Lupus...Lyme Disease. What matters is making sure you at the very least find a doctor that will help you.

I'm not convinced you've found that yet...but him prescribing something is progress. It's him admitting somethings wrong here. All you can do is go from there.

And listen to Roxy~Try to calm down. You are you're own best advocate. You need to have your head right to help yourself.

Went to see a different Rhuemy today - he was horrible - told me I had rheumatoid arthritis. Got the anti ccp test back its 100 - positive is over 2. apparently having high positive for anti ccp and a positive rf test indicates highly erosive disease.

He said he couldn't treat me because its not appropriate to be treated privately and that I could either start the meds or wait till I see my NHS rheumy on 21st September.

I'm really trying to calm down but I'm devistated.
Did you get it in writng from him? If so, take it back to the first rheumy and say now what? Stop worrying so much about the level of rheumatoid factor. Its not an indicator in all cases of the amount of damage. Trust me, I've dealt with this for 21 years. I'm comepletely negative for RF, or pretty much anyrthing else. And guess what, I've got what is considered moderate to severe RA with a lot of damage. So labs are not the big predictor people think they are. Julie

I'm sorry you didn't get the result you wanted today

Like Wayney says maybe take this back to the original rheumy and see what he says. In the meantime, if I were you, I'd give the plaquenil a try, I mean, what harm can it do, other than give you some relief.

You know where I am if you need me.

I'm slightly confused by what he means by it's not approprate for him to treat you?

And "Highly Erosive Disease"? One doctor denies you even have it and another proposes it's a "highly erosive disease"? No wonder you're confused...you poor girl.

What's your husband and your family think about all this now?

Sorry Julie that you're having a run around with this. Keep praying for peace of mind it will lend you the energy to cope with this disease or for any other ailment.

The girls are right, take the diagnosis from the new rhuemy with you to your reg rhuemy. You're seeing him on the 21st, that's not too far off. Try taking the plaquenil (don't forget to get him to book your baseline eye exam though, that's important) Poor girl, I understand your confusion but things will be better, if not more copeable, once your mind clears.

Jackie.

I don't think it'll ever clear right now - what are all your ccp numbers. Rozy I know yours was 297 (i think) don't know if its different scores in America?

I honestly feel suicide right now

I've had this for 11 years and I couldn't tell you the first things about my numbers.

I feel like Wayney....those numbers are use less.

What's your Husband saying about all this Julie?

Try and stay on and talk to us for a while Julie. You know we'll help you if we can

I don't know my ccp number either. It is only going to get better. Talk to your family. Start learning how to take care of yourself. I do yoga, walk, and swim. Also, I love music to calm me. Can you go to a gp for pain control? There is so much you can do to be pro-active. Come here to vent and to LEARN. We will be here for you Julie. Good advice Roxy...not to mention stress and worry will bring on flares...which is more pain.
I tried Tylenol Arthritis when I was hearing about the naproxen being bad to take...it seemed to help me with pain. Or even Advil...but DMARDS and prednisone are most important.
Julie, A gp can prescribe you prednisone and pain meds if you are still in pain.

What exactly has you so suicidal Julie? Are you so frightend by the thought of having a chronic illness or is it just the fear of the unknown? Are you in great pain right now? Have you heard, read or seen so many horror stories that it scares you this much to think of your future?

Don't you believe us when we tell you that it is possible to live a long, happy, productive life even with RA as part of the picture.

Aren't we living proof that life does go on after RA??

You'll have us worried all night with that kind of talk. How can we help calm you down?

If you're feeling suicidal over this...you need to seek out professional help. Call a hotline, mental health clinic or something. RA sufferers ROCK. We are more intelligent, have a better sense of humor, are tough as nails and appreciate life more than normies !! It is not so bad Julie. I look at it this way, I could have something worse than RA...my mom died of cancer at 51, my dad died of heart disease at 54. There are worse things out there IMO. you are exactly right murphette. i think of my life of having grown up with RA.... it wasn't perfectly fun but it taught me a lot. the way i figure it, if kids can survive this...adults can handle it too. they just need to learn to take things slow, not panic and get help when needed. My parents died in their 50s also. I have no intention of dying young and while I am still kicking - I plan on kicking some butt

I don't consider it a bad life at all. When you look at the world and all the things people suffer from we are very, very fortunate.

Maybe she'll be back later Lovie. It's around 9 15 in the evening here. Perhaps she's putting her little one to bed. Maybe her husband's home now. I'll check in later to see if she's been back.

I really feel for her, I felt just like she does.Bookworm38595.5525925926

We've all felt like that....kind of; but I never wanted to die.

JULIE; I might be gone by the time you get back on line, but know we're here for you and everything is going to be ok.

I feel so helpless.

Bookworm, Do you understand why she is having such a hard time changing rheumys?hi roxy

The medical system is so different over here. I'll try and explain. . .

We pay National Insurance through our wages here and that goes to cover our medical bills if we need it. Everyone gets treatment on the National Health System unless they choose to pay and go private. England, Wales (and Scotland, I think) are divided up into Health Authorities which are alloted money from the government to pay for health provision.

People sometimes have to wait for a while before they get treated, therefore some people choose to pay and see a rheumatologist privately so they get a diagnosis and treatment faster.

So in my area there is a rheumatology centre at the local hospital, where several rheumatologists are based. They are all employed by the National Health Service. My RD is great and the treatment we have received from the National Health Service is wonderful but some patients just don't seem to get a fair deal due to budget restrictions placed on them by their particular Health Authority. Basically, that's how it works (feel free to correct me if I'm wrong any of you UK posters out there!!)

I think that we all need time to accept what has happened to our lives when we are diagnosed with any chronic, life-changing illness.

I hated my rheumatologist when he told me I had RA but over time I have come to accept it and make changes to my life to enable me to enjoy life again. I think we can all understand where julie is at now in her life and she will come to accept it over time with our help, and support from her friends and family.

Debbie x

NB We still have to pay for presriptions here I think they would work out at around per item, but children, students and people who are on low incomes and who are claiming benefit get them for free. I have a certificate that I pay for yearly, approx 0 which means I don't have to pay for my medication.Bookworm38595.594212963Just curious Debbie. Would Julie have other options for a new rd? The funny thing is, I am a HUGE supporter of socialized medicine. I think it is so wrong when the quality of your health care is dependent on your financial status. I am grateful that I have health insurance, or the biologics would probably not even be an option. That just is not right. We are the only developed nation that does not have socialized health care. Its kind of embarrassing have you had your blood tested? If you have a positive ANA test then that is why you are possibly on plaquinel. You really need to add another DMARD to the mix though for joints.

Cathy

If there is a problem with the RD then Julie can get her GP to refer her to a different one. GPs normally refer to the nearest or the one they have used most often. But Julie is quite within her rights to ask for a referral to a different RD if she is having problems with this one. It's all down to her GP.

Unfortunately Roxy the UKs NHS is under a lot of pressure at the moment. People from Europe come here to get treated (the joys of being in the EU), we have a lot of illegal immigrants and also a lot of asylum seekers, as well as the usual unemployed who can't get jobs to pay NI. The majority are entitled to free health care. Consequently our NI premiums go up and the standard of health care goes down. I agree with you, we should have socialised health care, that is why the NHS was set up ion the first place. But it just can't cope with the numbers. I don't know what the solution is. No-one should have to go without treatment.

Of course, I work in a hospital and don't even get me started on hospiatl mangers and trust officials with clipboards. Not enough doctors, nurses or specialists and they get good money to stroll up and down telling us about it.