Unhappy angel 😢

[angeldiff]

Hi everyone, I've been a member for 3 years but haven't written anything. Reading all you're comments about living with R.A, how you try and cope with life and children. The last 3 years this site has really helped me come to terms with my R.A. Thing is now I need some information. I feel pretty silly asking but I don't really know many who suffer with it. I've tried many of the medications offered to me but I always end up with terrible side effects so the Dr's stop them. Now my Dr wants me to try the anti tnf's but I'm scared. My rhumy nurse doesn't seem to understand and if I say I have any new symptom due to the R.A they say oh its just another part of the R.A. I feel like they don't care. I've been having the worst flare of my life. My ribs hurt, hurts to breath, I've been getting terrible hot flushes and night sweats. Now I'm getting banging headaches and the sun feels like it's burning my eye balls out. I truly don't no what to do or who to turn to. My own gp is totally useless. He said before I had my R.A blood test that I was to young for r.a and the pain was in my head. So you can understand why I've lost all faith with him. I'm sorry to go on but as you all know this pain isn't something to laugh about. Any help or information would be a god send xxx

[Smiler53]

Hi Angeldiff, Sorry to hear that you are having a tough time with both GP and rheumy depot. But you are not alone here. I'm sure you will get lots of helpful answers on this one. There are quite a few who have the same problem with side affects etc (sorry, but I'm not one of them) So hang on in there they replies will soon come in. Gentle hugs. Smiler53 x

[angeldiff in reply to Smiler53]

Thank you so much hunni xx

[johnjohn]

Hi I was 23 when diagnosed 23 years ago so your never to young ..I would kill for anti tnf you have slow the progresion of this desease because for most of us it only gets worse

I came off meds for 6 weeks and have had worst year of my life I would try any meds once you never know it may be the one for you 😊

[Cagsie]

Hi Unhappy Angel, let's hope the anti TNFs turn you to happy Angel. I was scared reading all the side effects, but unless you try you will never know. I had problems with sulphasalazine ( been left with tinnitus) persevered with methotrexate despite feeling awful. Now off that and I'm me again. I started biological injection about three years ago and have been fine. Do get more chest infections but have young grandchildren who love to share bugs. Between the anti TNFs and leflunomide I'm great, no side effects. I hope you find one that suits and you start to feel like you again. Good luck x

[farm123]

Hi, Don't be afraid of anti-tnf's as they can give you your life back and help keep your joints more 'normal'. Yes it can take time to find the right one to suit you - you may be lucky and get on with the first one you try, my first was Enbrel and it worked for 7 years. Some are infusions which you need to attend hospital for and others are self inject. For me personally the anti tnfs have far less side effects compared to the DMARD's which apart from 200mg hydroxychloroquine I cannot tolerate and have been much more effective when we have found the 'one'. I was 19 when I first started with symptoms. Is there another GP in the practice you could see? Farm

[helixhelix]

From what you're saying about your symptoms it really does sound as if the RA is getting the upper hand. Although hard to tell which are side effects and which the disease, sore ribs, burning eyes and being feverish do sound more like RA. i've had these and no fun at all - I still can't go outside without sunglasses now.

Do you know what it is about the anti-TNFs that frighten you? It really might help to try to work it out and then find out more about that aspect of the drugs to reassure you. The other thing that might also help is to read the patient leaflet about a drug you feel ok about, like paracetamol, and you'll probably find that it sounds just as frightening. There isn't a single drug that is effective that doesn't have some risks. But this disease can be loads worse, so be scared of the disease not the drugs.

[kalel]

I am sorry to hear that you are going through a hard of time. I also had a hard time finding medication that worked for me and recently I have not been very happy with the standard of care that I have been receiving from my nhs doctor so on occasions I have been seeing a private doctor but tbh seeing a functional health practioner has been the best thing I have ever done.

Anti tnf does work for a number people so hopefully you will be able to change the medication that you are on.

If you have a facebook page I would highly recommend listening to some of the podcast from the paddinson programme for ra.

Hope things work out for you. All the best.

[nomoreheels]

I've fortunately not needed to progress onto anti tnf's or biologics so unfortunately can't help with any experience but many here have & report that they do well on them, hopefully they'll be along to ease your fears. I'd see it as your next journey down the RD road & I really hope that whichever is considered appropriate by your Rheumy makes the difference for you.

Two things though, could you see a different Rheumy nurse & GP, if you have the option of choosing who you see at Rheumy department & your Surgery? I had a nurse who wasn't particularly helpful & now see another at my inbetween appointments who is very good. It's also been so helpful for me to have a GP who appreciates what having RD is all about, in fact she's researched more about the disease since I chose to see her rather than my old GP & is now my named primary carer.

I hope now you've taken the step to post a question we'll see you around more now. Your experiences so far may be helpful to others if you're willing to share them.

[wiliby]

Anti tnf (enbrel) completely changed my life

As scary as it was starting its been nothing short of a miracle. My only side effect was low white cell count but it sorted itself out.

Only you can make the decision but things have to get better for you, you can't go on feeling as bad as you are.

No wonder you have lost faith in your doctor, what about your consultant?

Good luck, really wish you feel better soon x

[Ruth273]

Hi Angeldiff,

Don't fell bad for having a rant, we all need one sometimes. I can't help with advice on anti-Tnf as have never taken them, although my consultant has mentioned them in passing as mtx and Sulfa don't seem to agree with me.

I know how the frustration can get to you when you feel like you are not being listened to. My normal consultant is on Maty leave and I feel that the one I am seeing is not listening. I have had back pain and rib pain for a year which he tells me is nothing to do with my RA and it's a pulled muscle. The physio I then saw for the pain then informs me it's RA. Confused!!!

Keep plugging away at them they will listen eventually, good luck.

Hugs

Ruth

[maria_68]

Hi, if its any consolation it took a relief doctor to refer me to a Rheumatologist, I had symptoms for years before that, and although I have never heard of that medication I also have problems with medication, loads of alergies as soon as the medication is increased, get more information before you decide, not all medications are bad they all have pro's n con's.

Good luck x

[Hidden]

Hi,

I can't help with the anti tnfs but I can sympathise with you tho, I am currently in my worst flare up so far and my GP didn't help at all I even spent a week in hospital. I'm changing my GP now as I think you need someone you get on with and can talk to, then you can at least get your point across. I do think GPs lack knowledge of RA.

My rhumy is great, I spoke to his Secutary today and they have squeezed me in on Friday, I have tried methotrexate and sulphasiline already and if they offered my anti tnf treatment I would take it without a doubt as anything has to be better than this.

I have been having night sweats dizziness/vertigo and light sensitivity but my GP said it was nothing to do with my RA and sent me to ENT who were also useless, so I have learnt somthing today, I find the Internet very informative about the different treatments available. Good luck with it all and I hope you get sorted, I'm sure someone will give you the answers your looking for!!

[Menorca]

What sort of GP tells someone that the are too young to get RA!!!!!!! I've just had my 2nd hip replacement and I get the same thing by health professionals who say , your young for a hip replacement . I know just look at the and say , don't you know that RA affect children!!!!!i can't believe that people in X-ray depts etc wouldn't know that . Then they proceed to tell you that there father in law , gran or someone else elderly had their hip done.....

Keep fighting to get what you need to improve your symptoms , I've had flare ups since I was 13 and self care, rest , exercise all help to reduce flare ups. We need to all kick up more about bad treatment . I won't stop until we get better care....

[Karen77]

In my opinion, drs are so bred to believe that the answer is meds, that they don't understand (and show impatience/lack of sensitivity) when you don't say "Yes please!" to the next prescription and gobble them up. Worse is the patient who takes the drugs and gets no relief or cannot tolerate the side effects.

No lack of sensitivity here. We've tried the drugs, endured the side effects. I've even tried going off the drugs (I do NOT recommend this - the result for me was to discover that the drugs are doing SOMETHING and that I've come to need them).

When you're in constant pain, you are not yourself. I was not myself. I was cranky, impatient, depressed, self-centred, and self-deprecating. Going on Humira, I was able to see myself lifted from the fog after three days. I know it doesn't work that magically for everyone, but I would kiss the scientists who invented Humira, the investors who provided the funds to the scientists who invented Humira, the RA patients who were the human guinea pigs, the regulatory bodies who okayed it for public use, and whomever in my employee drug benefits program decided Humira should be a medication worthy of subsidization. But that's a lot of kisses, and kind of gross, so I will just kiss my boys and be thankful that I can pick them up, give them piggy back rides, and play tag with them.

It would be nice to not need the drugs, but it's okay to accept that you may need the drugs.

[angeldiff]

Thank you so so much guys for all your help. I'm so sorry that your all unfurling too. I managed to get a Dr to listen to me this morning. He totally understood why I'm scared of taking yet more drugs. He's put me on a weeks course of steroids at 40mgs just until this flare is over, to give me more time to think things over. I am thinking I will give anything a try to stop this crazy pain. Just nervous but got to think positive. I will walk my puppy up on the beach. I'm determined now. Thanks again guys, you've really helped me make up my mind. Xxxx