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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 33
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Hi
If you've just been diagnosed you probably have 101 questions floating around in your head and are not sure who can help.
Why not speak to someone else who has been there, done that, got the tshirt!
Trained telephone support volunteers are available to talk to you at a mutually convenient day and time on a wide range of topics related to your RA.
Concerned about the drugs? Worried if you will be able to have a family? What about your work? etc. Talking to someone else may be just the thing you need to put your mind at rest a little.
Call the Volunteer Network Team to arrange a call.
0845 458 3969
We are here to help
Kind regards
Volunteer Network Team
Clare, Paul & Joan
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Rank: Advanced Member  Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello,
I'm confused :-| I have been diagnosed with RA about 3 weeks ago. My Rheumatologist has given me a couple of steroid injections, first one in October and the second one in Nobember. Now he has prescribed me with Celebrex. Since, taking Celebrex, i have a lot more energy and less pain though still enough to wake me during the night. I am also suffering from IBS for which i take Buscopan and i'm also taking Lanzoprazole to protect my stomach. I have taken some paracetamols to top up when the pain prevented me from sleeping at night. I also suffer pretty badly with fatigue.
I'm confused because all my blood work has returned normal but i have pain in my knuckles, thumbs, wrists, knees, ankles and both big toes and one other toe. Both my knees give me the most pain. I'm guessing that the consultant came up with the conclusion that i have RA based on symptoms. Though i have had x-rays which shows wear and tears on my big toe and had an MRI on my right shoulder 3 years ago for which i had an operation. On reading the letter from the MRI on my shoulder, the consultant said that there were signs of RA (I think).
-- Writing this, makes me realise that i need to ask my consultant if the wear and tears in my big toe and shoulder can be specifically due to RA.
1s question: I'm concerned on taking DMAD, if suggested, in case i dont have RA as this was mentioned in my last appointment with the consultant. But because all the blood tests have been negative, i'm confused whether i really have RA.
2nd question: from your experience, is it safe to take the tablets that i'm taking? I'm worried about taking them on the same day. I have gastric pain and wind after taking Celebrex, therefore, i'm taking the Lanzaprazole 1 hour before eating, take 1 Celebrex whilst eating and take 2 buscopans 1 hour after eating.
The ideal would be to stop taking Celebrex but when i do, the pain in all my joints become VERY painful and the fatigue comes back to the extent that i cannot do anything.
signed confused Linda :-|
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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Linda38 wrote:
-- Writing this, makes me realise that i need to ask my consultant if the wear and tears in my big toe and shoulder can be specifically due to RA.
1s question: I'm concerned on taking DMAD, if suggested, in case i dont have RA as this was mentioned in my last appointment with the consultant. But because all the blood tests have been negative, i'm confused whether i really have RA.
2nd question: from your experience, is it safe to take the tablets that i'm taking? I'm worried about taking them on the same day. I have gastric pain and wind after taking Celebrex, therefore, i'm taking the Lanzaprazole 1 hour before eating, take 1 Celebrex whilst eating and take 2 buscopans 1 hour after eating.
The ideal would be to stop taking Celebrex but when i do, the pain in all my joints become VERY painful and the fatigue comes back to the extent that i cannot do anything.
signed confused Linda :-|
Hi Linda and welcome to the forum I can totally understand your confusion, especially at a time when all you want is answers... In regards to your first question, I would definitely suggest speaking to your consultant or GP. I'm assuming that if you have been given a diagnosis, you have been referred to a rheumatologist and if so then that is the best person to speak to about your concerns with DMARDS. For the 2nd question, again I would discuss with your GP but I have been on Celebrex and Lansoprazole and found them ok... Taking the Lansoprazole an hour before food and then Celebrex with food... I take Gaviscon Advanced but mine is just before bed as I get gastro reflux.... It can tricky because if the Celebrex is helping with the joint pain then you don't really want to stop it but if the gastric pain is there then its better to be safe than sorry... I know that you're probably not going to get to speak to your GP or rheumatologist until the New Year but in the meantime it might be an idea to give NHS Direct a call - 0845 4647 as you'll be able to speak to a trained nurse for advice.... Sorry I couldn't help any more.... Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Helly,
Thank you Helly for your reply. You're right in thinking that only the Rheumatologist can answer my questions, but posting my thoughts here helped me understand why i'm confused and i will raise my questions when i see my Rheumatologist in the new year. As far as Celebrex is concerned, i will need to speak to my GP as i'm suppose to take it on flare ups but when i stop taking it, my pains come back within 3-4 days and the fatigues comes back too. I will get back to my GP to see what she thinks how long it is safe to stay on Celebrex and will try to just relax and let it be during the Christmas and New Year holiday.
After all, i'm sure that Celebrex is not the strongest drug invented and if the stomach pain gets worse i'll ring NHS direct.
Thank you for the advice
Linda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Welcome Linda Well done to you finding site and way around it,its brand new site but not forum been going longish time. may i ask have u been tested for fibromalgia i wasnt for some time till november they gave me amtirpline for this only 10 mg at nigh really stopped the night time pain to level can now sleep. ive not had either drug u on but am on omprezole which is simalr to lamprezole. for acid reflux i take 1 hour before food in mornings as thats when my acid stasts. do ask away yes nhs direct also good toc all used them few times when gp been closed etc. also there should be an out hours sledoc service near you 24 hours for when gos shut. usaully staffed funnily enough by range local gps,they do rota for cover and do have cars for call outs aswell. an inbetween to going and e for more serious complanits. welcome you will feel at home. there is a sero negative ra that wont show up as postive rheumatoid factor thats one im being treated for im on a dmard well 2 now was just 1. you on pain releif at all-take it thats what celbrex is for. im 38 by way married,cat mad. ra side things/startd age 17. nras will re open for phoneline office 4th january. there are nras volunteers on this site also who are most regular members.some of them also run local support groups,do over phone support. lv inky07 cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hello and welcome
Firstly- I take celebrex and it helps the inflammation but it is NOT a DMARD.
it will not do anything to the course of the disease. It comes under the heading of a COX-2 inhibitor which means something to do with inflammation.
RA is a condition that is dx on a balance of tests and examinations. the most distinct test is called an anti-CCP test. there are other ones like rheumatoid factor and ESR/ CRP which also give a broader indication.
If there is any question over dx, then the anti-CCP test is the one to ask for.
If the RA is not settled on the celebrex you will need a DMARD like methotrexate, sulphalazine etc.
you should be taking a stomach protector every day.
also, on the steroids, it is not a long term answer as there are longer term probs (unavoidable for some but best to avoid if possible)
hope this helps a little.
Jennihow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello, thank you very much Inky07 and Jenni for your reply. It does help knowing that kind people are around. My rheumatologist initially thought that i had fybromialgia but on the last visit he said that i had RA. He has taken blood tests, not sure which one but i will ask him at my next appoinment. The blood tests were negative. Hence leaving me slightly baffled about his diagnosis, though the x-rays and MRI shows something and again i will need to ask him what exactly, he can see on those. The stomach is settling and i'm taking 1 lanzaprazole everyday, 1 hour before meal and taking Celebrex with meal. I'm definitely better but still have pain in my ankles, knees and wrists but at the level i can cope with. My feet and knees are red in the evening which i beleive is the inflammation, but they are not during the day. I can feel that whatever it is, its not going away but is getting slightly worse at days go by. I'm sure that by the time i'll see the rheumatologist, we'll be clearer on my situation. Sorry, i seem to be going round in circle but i'm ok and managing well. I'm just going through a phase of not being sure about what is happening, but i promise, i'll get my head round it soon !!  Thank you very much for your posts and can i wish you healt, wealth and happiness in 2010 Linda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Linda,
Welcome to the forum.
You'll get lots of friendly support on here, where we all know what you are going through.
I hope you get a clear diagnosis and onto some treatment soon.
Looking forward to getting to know you.
Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi,
I am so sorry you're feeling so confused, but I am not surprised as RA is both an unpredictable and confusing illness.
The problem is many people find it takes years for a proper dx as it *can* be a tricky disease to dx for the reasons you have stated; that sometimes the rheumatoid factor doesn't show in the blood therefore it baffles people.
Most rheumatologists will look towards the CRP and ESR levels in the blood as these are the inflammation markers and usually people with active RA will have high levels than 'normal' however, not always! There are some people with very active disease yet the CRP remains pretty low, and vice versa.
SO the rheumy has to ake into account other factors when diagnosing RA. Sometimes (again, not always) one has a low-grade fever, rather like having flu all the time. Or sweating at nights, or hot red joints, or losing weight. Unlike OA where these symptoms don't present.
The meds you've been given will not help RA in the long term although I can see why your Dr is hestitant to begin you on DMARDs. The understanding now is to treat RA aggressively as soon as diagnosis has been made so that there is less chance of joint damage and fast progression of the illness. It halts it quickly (via steroid jabs and beginning a DMARD) and this cannot usually be done by anti-inflammatories alone.
I hope you feel slightly more reassured and not more worried/confused!
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello,
Thank you very much for your replies. It helps a lot Amanda what you said about having problems in getting a clear diagnosis. What you said definitely confirms the decision taken by my rheumatologist. I do trust him and i understand why he's waiting a little before starting on stronger med, i'm sure he does want to make sure about his diagnosis first and i agree with this.
In the meantime, i'm going to be positive and keep trying with the Celebrex but it really does give me tummy ache. So decided to take 2 days off it over New Year giving a break to my tummy. I will go back on it today because i can feel that my hands are getting really red and aching and not feeling very well! If this continue, i'll get to my GP next week.
Linda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Linda
The only definitive test for new or suspected RA patients is the anti CCP test. For some reason (cost, I expect) many GPs are reluctant to carry out this test, but it's always worth asking for it!
Love Jeanxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Linda,
A warm welcome to the forum.
I can't really add much to what has already been said by my friends on the forum. I guess I'm in a similar boat to you and was diagnosed with seron negative inflammatory arthritis in January of last year. Throughout the year my blood results have gone up and down, to the point where I have questioned whether I have RA or not. However, my x-rays and scans have shown erosion to one of my toes, hands, elbows and shoulders and my rheumy has told me that when taking into consideration the whole clinical picture signs and symptoms that he can confirm a diagnosis of RA. I understand your concerns about the meds for RA as most of them are pretty toxic and hard going on the body, but as I have come to learn so is uncontrolled/untreated RA.
Love,
Barbara
XXXXX
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello,
I have one remaining question about RA. I under the impression that there are various level of severity. Is RA always become severe if not treated? Is that why it is always treated with these toxic meds?
Linda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Linda
I don't think anyone can predict the likely path of RA at the outset, although often (but by no means always) very high inflammatory blood markers may indicate a more severe form of RA.
The reason we take the meds is to stop the RA from becoming agressive and damaging, or eroding, our joints. Without these drugs, the RA would be uncontrolled. In my own case, I was left untreated for 6 years (long story) and then needed both knees and a hip replaced due to erosion.
Could I suggest that you read the NRAS information on the drugs we can take and how they slow down or even halt the process of RA. It's all on the web site under drugs/drug updates.
I agree that going onto DMARDs does seem a pretty drastic step, and not one single person on this forum is 100% happy taking them. However, the alternative is joint damage and deformity and erosion, which no-one wants.
GP's these days are usually pretty good about checking our monthly blood results, but it is always wise to ask for a copy of your own results and check them through as well. This way, you soon begin to realise when your disease is active and when it is not.
Hope all goes well for you
Love Jeanx
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Hello Jean,
thank you for your reply. From you you've said, I understand much better the situation about DMARDs and i agree that there are no alternatives. I'm sorry to hear about your story, it seems very unfair that you had to suffer so much when, perhaps with better care, it could have been either delayed or avoided. How are you coping with your knees and hip. Are you able to walk or work? Are you being looked after better now?
Linda
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Jean,
I forgot to say, that my question about DMARD showed that i'm still very unsettled and scared and i'm trying to see if there is any easy way out!! but it looks like its pointless protesting or running away coz it's not going to go away on its own. I will have to be brave like you and bite the bullet and do my best like the rest of us.
Linda xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Linda,
Can understand exactly how you are feeling as I was exactly the same. I was just bumped onto methotrexate the first time I saw the rhumatologist so was quite shocked. I must say though that I have been on it for 3 years now and have not suffered any bad side effects, not even the nausea that some people suffer. The fact that I have regular blood tests helps to allay my fears of complications and so far everything looks fine. I work part time and do have some bad times with flares but the methotrexate has been increased and other meds have been introduced and thankfully am still managing to keep mobile and keep working.
Hope you have had chance to read all the NRAS information. I found their booklets useful for letting people at work and at home know what I had going on.
Take care and let us know how you get on.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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Julie,
What you've said is very positive. I have read a lot about RA from this site and i have also ordered the various publications that i have seen from the NRAS welcome pack. All will become clearer once i have seen all the litteratures and also my rheumatologist at the end of february/beginning of march.
I must admit that it is great to hear from someone's positive experience, because RA can have such an impact in someone's life. I'm working full time and had a pretty bad night last night with pain in my hands and wrists, knees and ankles and i was wondering, how long i will be able to cope with this and working full time. So finally those so scary DMARD might help me continue with my work, cycling and playing the piano.
It's a thought!
Linda
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Linda
Even my story has a positive outcome!
I now have wonderful care at Bolton PCT with a friendly, approachable and very knowledgeable consultant. I am able to walk short distances, can climb stairs twice a day and the disease is now under control - so not too many flares. The replacement surgery has worked wonders! As I'm an old buffer of almost 66, I have retired and now drive my husband mad at home!
Take care and do let us know how you get on at your appointment.
Love
Jeanxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/28/2009 Posts: 39
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I will let you know how i get on, and i will even push my appointment forward if the pain continues to make me miserable.
linda xx
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