I had my first appointment with rheumatology nurse specialist today after seeing a consultant a few months ago on a referral from my gp.
I have been put on hydroxychloroquine, just 200mg once a day, she said just starting with a mild medication as at the moment it's relatively mild.
I'm just a bit confused as she said I have pallindromic rheumatoid arthritis, but when I've looked up there is pallindromic rheumatism, and rheumatoid arthritis? The first, PR, says that it comes and goes but doesn't leave damage, but can lead to RA. However, she also said I have damage + thickening in my wrists (my ultrasound + xrays have shown this up), so I'm confused as to which diagnosis I have been given? Especially as tbh it doesn't really come and go that much, it does move between joints though but it's pretty constant that my wrists and fingers ache even if just on a low level when I'm having a good day, and my neck also aches pretty consistently these days to the extent I'm having to take painkillers regularly. When it's really bad I literally can't get out of bed without screaming. So I'm unsure whether she means it's pallindromic because it moves about, but is actual RA, or whether they are saying I just have it but not really leaving damage, although they are saying it has? She also said that all the symptoms I have (fatigue, hair loss, anaemia) etc are part of the condition, and that if I get any hot or swollen joints I have to ring them as may need steroid injection (I have only had these a couple of times on fingers but have gone down within a day).
Hi, as I mentioned earlier, I am a patient of RA. My consultant prescribedthe same medicine which u are taking 2 tabs a day but now since my condition is under control the doctor has reduced the dose to 1 tab a day. Methotrexate 2.5mg is the main medicine has been reduced to 7.5mg once a week. Predinsolon 5mg which is a steroid has been stopped completely. I take one tab in case of severe pain plus vitamin c and d tablets. I, advise you to avoid eating beef, potatos and animal fat, take hot showers, keep your weight under control, exercise regularly but consult your doctor before u do that. Good luck
I use my ESR and CRP results (blood tests) to see if I am improving or getting worse, I can usually tell the specialist if my results are going to be high or low depending on the amount of disability and pain I have at any one appointment, my last appt, I announced to her my bloods must be high, I am in so much pain, she agreed and read off the results which were not pretty.
Exercise - as per syedq51, you really have to pace yourself, but you must move, I swim or try to 3 times a week at the local heated pool, I lie, as i don't swim as such, but tread water, row myself around with my arms only, stretch slowly and carefully so i don't hurt myself too much, and then do some more treading of water, rowing, stretching, I can do about an hour of this at any one time, but had to build up to that time.
Weight - I have a real battle to keep my weight down, very important, I have found a really good dietian who has been a big help with charts for the fridge door about what I should be eating and how much.
Hi, thanks, I don't have any weight problems and have a fairly healthy diet, also do moderate exercise x. Mostly I'm just confused about the diagnosis tbh rather than how to manage it and wondered if anybody else had been told similiar. Thanks
For many the diagnosis changes over time depending on symptoms and blood tests. I mean it can go from pallindromic to RA or psoriatic RA or even lupus. Often the doctors go by combination of symptoms , xray/ ultrasound/ MRI and observation
Unfortunately it is often a long process to find the right medications to work for ea. person. No one reacts the same way to each drug.
Many people start out with severe symtpoms from the very start but mine has progressed slowly over time/ getting more painful etc in various joints. For a long while my only symptom was severe fatigue not relieved by rest
Good luck in your journey. Keep reading and posting and following up with your nurse or md. And continue to ask many questions and keep a journal of symptoms on a daily basis for yourself and the doc/ nurse who follows you
Hi, You are absolutely right. This diseases progresses slowly until the patient is in acute pain and his life becomes miserable. We should continue to consult the physician regularly esp when we notice any change in our condition. My physician conducts lever and kidney function tests every six months to see if the medicines I am taking are not affecting these organs. Sometimes when I feel comfortable, I skip taking some medicines for few days and when the pain starts, I restart taking RA medicines or minimize the doses according to my condition. Thanks for the input
Thank you Gloria, good idea think I am going to keep a diary from now on, tbh I think I don't mention enough symptoms as I have just got used to some of the pains as 'normal' and manage them. So if I keep a diary and note down everything, it will give a better indication of if the meds are helping or not. Thank you x.
Thanks, I've been told it's best to keep going with the meds not skip. I'm planning on keeping positive and not ending up with a miserable life, fingers crossed! Hope you can feel better soon.
Yes my nurse specialist advised me to keep a diary of any side effects and let them know of anything major to swap meds etc. But her advise was that if don't take meds and get joint damage, that is irreversible, whereas side effects can hopefully be controlled and worked upon.
Yes she is absolutely right. In my case I took all the medicines regularly until my condition became stable. After almost one year my physician readjusted my doses and now I am on a minimum dose. Some medicines have b÷n stopped. Regular exercise controlled diet and med treatment are the main keys to speedy recovery.
I m confused too! Joint damage is one of the deciders for RA. I understood palindromic rheumatism completely goes sometimes.
with RA it can move round the body and affect different areas. My original diagnosis was psoriatic arthritis as I had tremendous pain in 1 shoulder, 1 knee1 thumb ( not symmetrical) but it soon affected the matching joints and there was evidence of joint damage in my feet( had just thought that was standing too much in my job)
can you contact rheumy nurse with updated symptoms esp if you are taking so much painkillers. Because IF it is RA the UK NICE regulations say early diagnosis plus aggressive treatment early on is best approach to delay development of RA. Hydroxychloroquine is a mild dmard . I was started with methotrexate- dose increased twice, then 2 others added. As was still in lot of pain and stiffness after 6 months of 2 DMARDS was put on biologic which has transformed my life.
i agree with you it's vital to be proactive with this. To have a diagnosis of palindromic rh you must have had periods of time with no symptoms. Is that correct? Or are they being ultra cautious and really should be considering a different diagnosis and more aggressive treatment. Only they can really answer that, so go back to them with your concerns. Be very honest about the pain. Never accept steroid jab as a treatment only a symptom reliever while waiting for another med to work. the key question you so right,y point out is ' if I have joint damage, doesn't that mean RA' ? If they say yes you need stronger dmard than hydroxy.
I'm glad out health system isn't the same as yours. I at least get to see a Doctor for my RA/PsA. Couldn't imagine anything worse than consulting a nurse about anything more serious that a pimple, I'd have second thoughts about that as well.
Hi there I am sorry you are confused about your diagnosis, I suspect you are one of millions! I have posted a few times on this site as I have had ra for 32 years. Thought I knew everything there was to know about this condition. I DIDNOT know it could cause anaemia, but have found out in last few days as I have been so weak and exhausted with very low bloood pressure and racing heart, I felt I was dying. Am awaiting blood test results which if it comes back that I am. anaemic will also explain why for the last 5 years minimum I have had terrible leg cramps for at least 5 days of each week and for up to 3 times a night. Also have involuntary twitching muscles continuously in my right leg. My gp told me I was just one of the unlucky ones, and treated me with quinine. I even filmed it to show my consultant who thought it was quite amusing. Have always told my family not to seek help from Doctor Google, but you know what , at least you get possible answers instead of being fobbed off with nasty drugs that sometimes do more harm than good. Still bedridden, still feel dreadful
Hi Carole, I too get the most agonising cramps in my left leg also mainly at night! I have to stretch my leg out and watch the muscle twitching for a good minute or so before it "calms down" sufficiently for me to get back into bed. My GP put me on some Quinine tablets that stopped the problem for a while but then it flared up again. It seems to be quite common among RA sufferers so i'm led to believe.
Check out motor neuropathy mike I discovered it after reading a post on this site last week. I seem to have all the symptoms but have made an appointment with gp a month ago !! And will be getting it sorted once and for all. As for cramps being common in ra, no one has told me that before. I believe these heavy meds (I have been on embroil about 10 years ) was one of the first people in this area to trial it. ) do a lot to your body by stripping vital vitamins and minerals, leaving you at risk of all sorts of conditions. IEmbrol changed my life and am grateful for the relief it has given me over the years. But at the end of the day it is a drug that can do harm. Sorry to be so pessimistic, depression as you know is part and parcel of RA
I couldn't afford your health system so I'd probably end up seeing nobody I do still see a consultant and my care is consultant-led so they have made the decision about the treatment, the specialist nurse led clinics are to enable more frequent appointments which wouldn't happen with a consultant as not enough to g oaround everybody, unless I paid an extortionate amount for private. I would generally prefer all ill people get treated than just those who could afford it.
The clinic is lead by nurses with a specialism in RA, they are probably more knowledgable about it than a general doctor would be tbh.
Our public medical system is funded by the tax we pay, so whilst we do pay, it's via taxes everyone worker pays. It costs big to see a private Doctor or specialist, but a large portion of that is paid by insurance. Private health insurance is getting beyond affordable here now so many don't have private health insurance and use the public system.. Defence covers any medical ervices I need so I go private. Unfortunately, all the guns in the medical world here work for the public system.