The long awaited appointment with my consultant arrived today to discuss Anti TNF treatment. I've done all my reading up and was ready for a good chat about options, as it was I did not need to be so prepared. I have been referred for my assessment (which means no Kenolog injections for the foreseeable future - Consultant said it would mask what was going on and I need to be as bad as possible at my assessment!) but the independant nurse that does the assessments is apparently off sick at the moment so it could be a couple of months before I get an appointment - more waiting!
I have had to come off diclofenac (sp?) completely at the moment as I have had a month of tummy problems. I wrote a few weeks ago that I had had some pains and sickness, well it kicked off again two weeks ago but much worse this time. I will not go into detail but it was horrid! Went to see my wonderful GP and she said that it would seem as though I have had some stomach damage (thanks diclofenac!) as there was a lot of blood when I was sick.
.....quick break from writing whilst I stop my son putting E45 and a nappy on his teddy!!!!....
I have a scan to check my gall bladder next week (I have some pain just under my rib where it is) to rule out gall bladder inflammation and then if it's not that I'll have an appointment made to see what's going on with my stomach. In the mean time I'm living off not much at all really - just don't fancy anything other than the food stuffs that I should not have, I am soooo bored of soup!
Anyway that's off my chest now so back to rescuing the teddies as poor rabbit is now having E45 rubbed all over him!!! Thank goodness for my boys they keep me smiling
Mel
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Funny bout poor Teddy, you have to laugh You should have been prescibed tummy protectors (losec) if you were taking diclec for any length of time, naughty GP!
I think it is best, if you are not too medicated (pain relieved) when you see Consultant for anti tnf, as you want to give him the full blast of your woes, and not have the symthoms masked by pain killers..
I hope you get the anti tnf, as it will be the best in the long run.
In all fairness my GP prescribed me omeprozole back in May but I'd been on Diclofenac for over four years by that point - it was the consultant that never prescribed me anything to protect the lining of my stomach. Isn't it awful that we have to allow ourselves to get into such pain before we are allowed something that in the long run if it was prescribed straight way would maybe save thousands for the NHS, this is actually what my consultant said to me today. Regards Mel
Hi Mel, good news about the referral for anti tnf. I was also told that I had to be measured on a bad day and if I was on a good day when the appt came through with the Rheumy Nurse to make as much noise as possible when my joints were squeezed!
I'm surprised your GP didn't put you onto Diclofenac suppositories in view of your tummy problems. When I first went onto MTX tablets and other pain killers, was given Lansaprazole to protect my stomach and I still take it from time to time for a few days if had to take a lot of pain killers and anti inflammatories.
re your tummy - it sounds as if you will need some sort of investigation into what is going on in your stomach particularly as you have had blood when you are sick. Hope the gall bladder is ok when the scan is done.
You need to be on foods which won't cause too much stomach acid leaving out such as curries and rich and spicy foods. A bland diet for the time being is best to give your poor stomach a rest. Fish, eggs etc. will help - anything that doesn't need a lot of digesting - hence more stomach acid. Both my parents had stomach ulcers which bled so had to be on a bland diet for a long time to help it heal and settle down again. Has your GP given you any medication to help your stomach settle or is he waiting for the test results?
Summer on here might be able to help with suggestions also.
Had to laugh about Teddy - hope he kept his nappy clean!
...it's really difficult when it comes to food, I've been told to try and eat foods that will settle the tummy but at the same time foods that if I have got Gall bladder problems will not make that worse. Milk makes me feel terrible, so dairy is a big no no. Love jacket potatoes but like most people I like a bit of butter on it, I can't face it without! Mostly I've been having white fish, rice, veg, baked beans, and soup; not a very varied diet I must admit but hopeful I know what I'm dealing with soon. On the plus side I'm not sure if it's because I've come of diclofenac or because of my really boring diet but for the first time in years I'm not feeling bloated - see every grey cloud!!! Both Teddy and Charlie are now fast alsleep in their nappies!
Just to tell you that my health trust is moving from diclofenac to ibuprofen because of concerns over cardio vascular risk !. both are a bit rough on stomach however x
I agree that you need invesitgation into your tummy, but my tummy sounds like it is very similar to yours ;-)... I had gaul stones (supposidly) when i was 16 having taken diclofenac for 5 yrs (although when they took my gaul bladder out they couldn't find any))), then they diagnosed pancreatitis as that is very particular to just below the RIBs pain that transfers to the back (does yours), this can be nasty so next time you have your bloods checked ask them to check you Amulaise just to be sure, anyway when i was 24 they finally transfered me on to Indometacin suppositiories and i'm still on them now, i think they are great, if you can handel doing the whole suppository thing you will find they work much better on you pain/inflammation and completely bypass your stomache!!! Also Gina is right the GP should absolutely have put you on anti-ulcerants eg omeprazole...i still live on them as do almost every other arthritic i talk to.
You really have had a rough ride haven't you, I feel bad even mentioning compared to what you have been through. Yes my pain does sometimes go through to my back - sort of through the side of my ribs to the back. I'm sure I'll get there eventually and know what is going on. A few years ago I had over six months of pain, first I was told that I had a tumor, then I was told I hadn't - after months of worry. Eventually I asked for a second opinion at another hospital (after my husbands boss phoned me up out of the blue and said he had been looking into the matter and gave me the names of who I needed to see - bless him; I'll always have a soft spot for him after that!!!) In the end it was discovered that my RA had attacked my lower organs and my Appendix, bowl and womb were stuck together - so the moral of the story is it may take time but I'll get there! Someone on here (from France) was saying they think suppositories are the best way of administering drugs, interesting that you say you find better relief with them too. I suppose when you think about it that's how hospital administer drugs after an operation. Sorry I'm blabbering!!!
I was really sick on diclofenac! I won't even discribe what it did to me publicly let just say it was bad.
Back in July I was told that the const had to see me at my very worst to do the chevk to see if I qualified for anti Tnf and I had to be assessed a month apart which is the nice guidlines. I was told by const to stop taking any meds that would mask my symptoms a good few days before the appointments. Well the month waiting for Assesment was so bad I ended up in hospital before the month was out so qualified on that basis.
Hope your stomach is better now, I know I have been given omeprozole to protect mine.
What happened in the end, were you taken off diclofenac? What do you take now? I've been told they will not prescribe any anti inflammatory now until they know what is going on with my stomach.
My Dr swapped me to naproxen and the omeprezole as soon as I told him about te bleeding. It settled down quite soon after I stopped the diclofenac. Took naproxen for a year until I was recently admitted to hospital and now when they ask me if i am allergic to anything I say diclofenac as Inever want that reaction again.
Diclofenic causes diverticulitis and its not very nice. I was on diclofenic and i got taken off it as it caused my bowel to bleed. I have recovered from that thank goodness,but i have to say my health has gone downhill since. Hope this doesn't happen to any of you here. sylvia.
I'll be keeping it all crossed for you, gosh it's taken ages hasn't it?all the best x
Ladies: Can someone describe to me, what is a consultant, what are their qualifications, etc? Why do you see a consultant instead of your General Practitioner or Rheumatologist? Interested in understanding your health care system. Seems complicated. Thanks for educating this American
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How long should I wait for anti TNF treatment ?
