Any Suggestions Welcome!

[Pmr650]

If any one could offer any advice I would be really Grateful! I have a Reumy Appointment on Friday, with the original Consultant who diagnosed me in April, and am feeling really scared! Silly I know, but after 3 Failed attempts at DMARDS, and a refusal to take the last one due to the possibke side effects, I am really scared where we go next. My RA is active and has been since April, the only relief I get is with the Depo Medrol injections, which only last upto 3 weeks on me, and I have had quite a lot of these due to really bad flares and having 3 Ruptured Baker Cysts. But they work for me despite the side effects of Silent Migraines. I am really worried that I will be refused Biological Drug consideration, because I refused last DMARD, I was originally told if I didn't take the Last DMARD they would refused me a Steroid Shot, I was in so much pain I couldn't move, and was so low mentally and emotionally. I did get the Steroid shot, 24hours later, with a lot of remarks from the nursing staff, about refusing DMARD, and how Dissappointed the consultant was about my refusal.....

I am quite new to this RA horror and although I have read loads talked loads to others, I am still struggling with coming to terms with it, and the impact it has on day to day life. I feel isolated by it, not being able to work, or go out much, I also have Peripheral Neuropathy, in lower body I have had this for years and taught myself how to walk again and ride a bike! None of which I find able or easy to do now! Definitely No Bike riding! I'm unable to make my cakes anymore I made Wedding, Birthday and Celebration cakes as a Hobby and a source of income, which I have had to give up, due to hands! I'm so worried, I'm getting stressed all the time just thinking about it. I have lost lots of weight since April but they don't worry about that, I do immensely, as a Natural Skinny Bean! Due to Thyroid problems, and the stress, and anxiety I have. If anyone could guide me or help me in how to deal with the consultant I would be extremely grateful. I fear Christmas as I don't want to be ill all over the holiday, and spoil it for my family! Thank You, I wish you all a Pain Free and Peaceful Time this Christmas Time. X x

[helixhelix]

First off, try to stay completely calm at your appointment. Difficult I know when you're in pain but you need to be able to explain calmly why you didn't want to try the drug you were offered without getting the doctors back up. It might help to write yourself some notes first about why you didn't want drug X, and also questions about what other drugs you can try and the process for getting them. Make sure you have to hand a list of the dugs you have tried and the results as the doc might have forgotten.

And also make sure you take a pen, so you can note down the answers to your questions. And if you don't understand then ask again! Good luck

[Pmr650 in reply to helixhelix]

Thank you for your reply, I certainly will take on board your suggestions, exactly I don't want to take drugs without being able to discuss the implications with a professional.

[Matilda7]

I too have fought valiantly to stay off drugs, but have got to the point where I have accepted Biologics as the best option. However to be 'allowed' to go onto Biologics you have to jump through hoops laid down by NICE.

It might be helpful to look at the guidance that the medical staff have to follow. NRAS have a very good publication which they will send if you ring their helpline: 0800 298 7650.

Hope it all goes well and that you can enjoy Christmas!

[Pmr650 in reply to Matilda7]

Thank you for your reply I'm not trying to stay off drugs just feel that without consultation and actually being seen drugs just shouldn't handed out like they seem to be at my clinic...this will be my second appointment in 8 months with consultant! Crazy active all that time. I'm happy to give Biological a try, hopeful I may get somewhere on Friday! Thanks again

[cathie in reply to Matilda7]

I think you can also get most NRAS publications online.

[emshanley]

First off, I don't entirely understand why you refused the DMARD treatment. It does work, although the side effects can be unpleasant for a little while. I'm not gonna try to convince you to take it, just curious as to your reasons.

Secondly, you need to stay calm. If you're all over the place and panicking, they won't take you as seriously as if you keep a level head, and make sure you know what you're talking about and can clearly explain your reasons for accepting/not accepting possible treatments. Also make sure to discuss any previous treatments you have tried, and how successful they were.

Have you considered anti anxiety medications such as benzpdiazepam or anti depressants such as amitriptyline? Amitriptyline is also a tricyclic anti depressant so could possibly help you deal with the pain, I've been prescribed it for my RA and it works moderately well, not to mention how well it helps with sleeping issues.

I wish you the best of luck and a pain free christmas.

[Pmr650 in reply to emshanley]

I have taken Hydroxychloroquine, Methotrexate, Sulfasalazine, all with dire side effects, leaving me completely unable to move, or leave the house. I was offered Leflunomide, this time a drug which is not really compatible for someone with existing Peripheral Neuropathy, or weight loss...as it can induce these, I'm not adverse to taking treatments but cannot become so I'll through side effect that my life becomes non existent. I am Hypersensitive to drugs most of the time, NSAID allergic, etc..and always have to be treated with half doses to begin with, due to this, part of my decision lies with the fact I have been prescribed most of the DMARDS without even seeing a consultant, just on the phone with Rheumatology Nurse...so my notes are never referred to I have to remind them of my allergies, and when I mentioned the PN to her over she was unsure! Without consultation, of a consultant issuing off the list as it seems my Rheumatology Dept does, seems very risky...there are Hundreds of patients, at my clinic and they obviously do not know each and everyone! It appears to be just a format! This is only second appointment with consultant I have had in 8 months! All the others have been with Nurses or specialist nurses...

I again have been considered for antidepressants as this is part of the Peripheral Neuropathy treatment, but again sensitivity and side effects have played at big part. I am awaiting referral from Pain Clinic, to try other more natural remedies.

Thank you for your reply, it is appreciated. Wishing you a Pain Free and Peaceful Christmas.

[emshanley in reply to Pmr650]

That makes sense, in that case I really do wish you the best of luck. That's incredibly unprofessional of that hospital, by the way! Any chance you could get a referral to somewhere that would treat you better?

[Pmr650 in reply to emshanley]

I am moving Hospitals in the New Year as I feel the treatment and continuity of care does not exist at the one I go to at the moment, but my GP is extremely slow at referrals so annoying.

Thank you for your reply.

[farm123]

Very few get away without taking any drugs and they all have potential side effects and we don't know how they will affect us individually before we take them.

Have a look at the drugs list on the NRAS website for further info on each one. Many hospitals have their own protocol regarding order of drugs offered and criteria that has to be reached before bios are offered as they are very expensive.

Have with you a brief record of which drugs you have taken and why they did not suit you - consultants can have so much paperwork in front of them it takes them time to find the info which could be better spent talking to you. Add to that a list of bullet points you would like to cover/have answered. If possible try and take someone with you who knows how you are coping and can help out if you lose it (number of times I have cried during appointments which is very frustrating when you have a limited time).

Most of the biologics do appear to work best in conjunction with a DMARD which as first choice for many consultants is MTX although it is possible without as I can only tolerate 200mg hydroxychloroquine out of the DMARD range and I spent quite a few years with biologics on their own. Farm

[Pmr650 in reply to farm123]

Thank you for you help much appreciated.

[cathie]

I'm out of touch with NHS England as I'm in Scotland but it sounds as though you've tried enough DMARDS to qualify for biologics. Please try not to worry, the literature they have to give you with medication does document the worst cases. I've always been well monitored - especially during biologics infusions. Its also worth being aware that some of the literature is outdated. I went on to biologics first in about 2001 and they were very doom and gloom about it then, and overly cautious. Probably just as well, that is reassuring as well as it doesnt put people off.

Good luck

C

[Pmr650 in reply to cathie]

Thank you for your reply, I do hope so, cannot keep going down the road of non success with the DMARDS I think they will have a good documentation of some of my side effects, as they kept having to give me steroids injections to combat some of them...I'm not sure what the protocol is here in England..probably very complicated! No doubt ....funny enough though from the day I first saw the consultant he said your probably going to be more suited to Biologics! But you have to be take the DMARDS first. Really we have to make you really ill before we can start helping you! Their words! Lovely 8 lost months of my life! the emotional and mental damage has been awful...CBT didn't help either... Antidepressants are not really an option due to Allergic reactions. Have been practising Self Help...so far it's been ok first day in weeks I had a teary day today but getting in a state about Friday! Thank you again I really appreciate it.

[Ali_H]

I would write down what happened that meant you had to stop the other meds and why you refused the last offered med and then I would take someone in with me (a family member or a trusted friend) for moral support.

All the best

Ali

[Pmr650 in reply to Ali_H]

Thank You, yes I was going to write it all down, as its been so tricky from the beginning, really doesn't help that I am Hypersensitive to most Drugs and have to have half doses of everything, because of my metabolism being so fast, I'm built like a bean pole! Lanky and lean, leaner since this beastly RA started which really distresses me! Grrr..sorry deviating my Husband will be with me as I'm so nervous now and a tad scared of my consultant! Silly at my age but my confidence has nose dived! Thank you again

[Jhac27]

I refused one of the DMARDs for several years but explained my reasons and the consultant accepted my choice and worked around it. I hope yours will too.

[oldtimer]

I can remember having this sort of conversion with a registrar: "What we try next is X treatment". Me: "That's not suitable for me because of .....". Her "Well, it's what is next on the list. If you are refusing treatment then we can't help you" Me: " I'm not refusing treatment. I am explaining why I can't take that particular drug."..... eventually she went and talked to the consultant and I came away with an alternative management plan.

Inexperienced people "go by the book". You need to have a consultant opinion.