RA drugs

[New50]

Can anyone tell me where the drugs we are given are from? Who are the manufactures and are they uk based?

[nomoreheels]

Can I ask which in particular? Otherwise you see it'd be a very long list & not speedily answered as there are many used in Rheumatology from the lowly paracetamol to the very costly biologics. Also there are both branded & multiple generics of the same med so not necessarily an easy task.

[New50 in reply to nomoreheels]

Methotrexate Sulfasalazine and hydro ones as they are the ones I’ve been told I will be given when I go to rumy still trying to get my head round what has caused this and why it’s taken so long to be taken seriously and what those drugs will do to help. I find it hard to think clearly and my body has been swelling for over 4 months been given steroids but they bearly touch my swelling I keep trying to walk but at best 20 mins without pain after two years of not knowing why. All info available isn’t telling me why my feet hurt pretty much every day after trying to do simple things like being on my feet. I have to sit down every day for most days and don’t have answers xxx

[New50 in reply to New50]

Two years of my feet just getting worse and now hands knees and now I’m feeling it more in my shoulders and elbows. Scared to do much as it just makes me swell up. 6 weeks of steroids slowly lowering the dose and I’m still swollen not knowing what to think. All info seems contradictory xxx

[nomoreheels in reply to New50]

I feel for you but unfortunately RD can be a so & so to diagnose in some. The other thing is some GP's aren't well up on autoimmune diseases & don't click when there are what we would think are obvious symptoms & why should they really, they are General Practitioners & can't know everything unless it's something they've come across before. Factor in not everyone presents the same so they're not always exactly the same symptoms it can be missed for something else such as Achilles issues, alarm bells don't always ring. Not defending them per se or placing blame but were you sure so long back you had RD? I was very fortunate & diagnosed super quickly because my GP was a GPSI (GP with a Special Interest), she'd taken further training in Rheumatology so knew exactly what the problems were, my feet specifically. I'd been walking (if you could call it walking, more waddling) on the outside edge of my feet because that was least painful. They hurt because that's what disease activity is, the same with the other joints, you have active inflammation in the lining of the joints & there are a lot in the foot area. This why they become red & so sore, the immune system is mistakenly attacking what keeps our joints moving effectively. It's little wonder it makes you feel wretched!

Wait until you see your Rheumy & diagnosed, then you'll see which treatment plan is specific to you. Was it your GP who said you'd start on MTX, SSZ & HCQ, or did he say it might be one of them? Whilst triple therapy is used your GP won't really know until he receives the report which DMARD you'll start, this is why he needs to send you to a Specialist, they're Specialist meds so only a Rheumy will know what may work best for you.

Other than the steroids, which won't help the same now you're tapering, has your GP prescribed anything for the inflammation & pain at all? If not do ask for something, you need it by the sounds of it. If he increases your steroid dose it will likely be tricky arranging to come off them in good time. But if he does as my GP did & give you pain relief & an NSAID you'll be ok taking them right up to a few days before your diagnosic appointment. My GP advised me to stop mine a few days before so I'd be med free & my symptoms would be back for my examination, bloods & any imaging that was required. Whilst they won't treat you they'll make you a bit more comfortable.

[New50 in reply to nomoreheels]

That is the most information piece of information I’ve had. I get it it’s not regular for gps to come across this but feel I’ve been ignored and dismissed and won’t to be overly sensitive but I just feel so limited in thoughts and functions it’s horrible. I’m trying to accept my body isn’t playing ball but do t know what to do while waiting sorry Hun but it’s frustrating xxx

[Bubblyb in reply to New50]

Hi New50, I too was prodded and probed for years with vague pain going on all over my body and then when they didn’t know what it was, I was just scooted away and all was forgotten. Because I would start to feel better sometimes. I did not know what was wrong with me for years, and then finally when I had to use a cane to walk, and the doctor saw the fluid that came out of my knee, then is when the more specialized tests started and I was finally diagnosed. I for sure had no idea about RD or any autoimmune diseases. I really feel for you because I know the frustration that comes with this diagnosis. I wish you all the best and that you can receive some help for your symptoms. 🌷🌸 {“not too hard” hugs}

Becky

[New50 in reply to nomoreheels]

I have some naproxen but they make my heart flutter a lot and make me feel anxious so don’t want to take them xxx

[nomoreheels in reply to New50]

That is one that has been in short supply in places so you don't need to concern yourself about that. There are other NSAIDs, different types, that your GP can prescribe so do ask.

[nomoreheels in reply to New50]

Ok. So, methotrexate tablets in the 2.5mg multiple doses we're prescribed there are 12 brands/generic manufacturers alone, then injections there are a further 5. For sulfasalazine there are 9 & hydroxychloroquine 10. If you want all of the manufacturers then I can't list them now as it'll take some time. Is it necessary? I mean is there a specific reason you need to know?

[New50 in reply to nomoreheels]

With some info that’s been out there if I’m ill and need the meds there’s a shortage??? But like doctors and general advice. It’s taken me ages to understand what’s going on in my body and very little help. I’m still in the dark. I would rather be able to ask questions when I have a clearer idea of what to ask because I just don’t know. Feelings are the biggest questions I need to ask and yet felt very left alone with them for so long. It’s made me feel very angry to very sad but knowing what or why this circumstance I’m left with, from saying I hurt in various areas of my body to getting to rumy and still left on hold and not being able to function ie going to a shop to get basics and financial aspects to continue to be independent. I don’t have family or friends who can help so pretty much left alone with my thoughts an disturbing disabilities. Day in day out I try to understand it all but it’s not like I can do everything by myself. I have days I can get out but eventually my car won’t work and can’t replace it so do I give up where I live to live In a van near a shop or do I force myself to be homeless in order for care? Because all I’m feeling and understanding is no one gives a shit

[nomoreheels in reply to New50]

Only on the odd med, & your pharmacist can always ring round their suppliers, they usually have two or three. Or you try getting your scripts filled at another chemists with different suppliers, there will be ways. You won't be left with nothing so don't worry. Stressing about things will make things worse & you're not diagnosed yet so won't know which meds you'll be prescribed. I'm sure your Rheumy will be aware & he'll prescribe which is available if it does come to wider range shortages. So for the time being forget needing to know about how many different brands there are, as I've said there are plenty & it's not going to a situation where there's a complete halt from every manufacturer.

It's always the worst time before diagnosis, we empathise because we've all been exactly where you are now. It can be a lonely world if you don't have anyone to talk to but you have the advantage, we're here & you can read til the cows come home on nras.org.uk & versusarthritis.org.

Must pop off to bed now. I have a brand new goose down duvet to crawl under, fresh bedclothes, bliss. You have a good nights sleep & see how things lie in the morning. Night night. 😲

[New50]

I tried nurproxin but it made my heart flutter a lot the steroids have been ok but with every movement reminds me it’s not going away. I understand the Ra drugs help but don’t stop the pain. I just want my feet back it’s for me being such a busy person dealing with slowing down and putting on weight. It’s not like I’ve Been slow thinking or doing but it’s compromised everyday. I don’t actually want to claim for anything but I’m worried in time if I’m that physically messed up I won’t be able to do stuff n will need to rely on the state given I never have xxxx

[nomoreheels in reply to New50]

It can in some people but that doesn't necessarily mean you'll react like that to another. You've misunderstood, the meds can stop the pain but you've to be patient once you start treatment because they're not fast acting. When I say they can stop pain I mean the reason for taking them is to control the disease, control means work on the inflammation which causes pain. Obviously if there are joint erosions or destruction it's more difficult because that's already occurred & you can't mend what's broken but you may have a mild form, even though you're probably saying it doesn't bl@@dy feel it that's because your disease is out of control, unmedicated as there's too little steroid in your system to tackle the inflammation & they never were intended to treat, only manage. Your feet will feel better, I can't say they'll be back to normal because we're not normal (!) but they won't hurt as much as they do now.

There's no saying you'll need benefits, many people with RD don't & whilst they may need some adjustments lots of people continue working. Some don't of course but with the meds we have nowadays it's no longer the end of everything for most. Just try to stop worrying about what may not happen, I know you have time to sit & think but you could respond well to your first meds so try altering your bleak mindset to a more positive one. Try to occupy your mind with other things, oh & try an Epsom Salts bath or if a bath isn't so easy try a bowl, hood feet may thank you, your hands too. Do remember that most people here in common with all health forums are struggling, looking for answers because they're like yiu or newly diagnosed, there are countless more out there & even past meknees who only dip in & out but mostly getting on with their lives because they're doing well. We don't hear about those so often so can't give their positive perspective of living with RD.

[New50]

That’s so nice you’ve said that because for the last week all I really want to do is cry and I’m not like that I hate drama but this is really affecting me and thank you. I have to do nothing some days so it does hurt my hands. I’m trying to be positive and focus on being better but I really don’t know what to do. It’s ok for 15 mins I try to do the norm then it hurts so I stop wait for an hour. Last week I walked for 40 mins couldn’t do nothing for two days. I’m trying to do at least one positive thing to make me feel better every day. Some time this Sunday I will try to get dressed and walk outside to get air n see the trees n smell them. I just seem to live in my pjs n look forward to eating. Since feeling the symptoms it’s slowed me down and put on weight. I’m now 11 stone worried from what I’ve read about the condition that Ra causes heart attacks respiratory conditions from in activity but I don’t know what else to do. My feet hurt so much most days soon as I try to do anything for more than 15 mins more than that they swell up sorry I just feel like I’m moaning my head off but I really do feel fucked up

[nomoreheels in reply to New50]

It's ok, I understand. Pain can be unrelenting & with that comes the tears. Add in the uncertainty of what's been going on for a long while now & it all adds up to a whole lot of misery. Don't wallow in it though, you're nearly at the starting line to feeling better. See what the MRI reveals & you're another step further. Don't do anything except concentrate on the positives, the hard slog is nearly behind you. Take some advice & stop googling, you're scaring yourself unnecessarily, there are a lot of shall we call them inaccurate sites out there so just keep to reputable ones such as the links I gave you.

Do try bathing or soaking your hand/feet in Espsom Salts, it will give short term relief & help you relax a little. Treat yourself to your favourite something, whatever lifts your spirits. Try to relax, it really can help calm your worrysome part of brain down, an afternoon nap shouldn't be poo poo'd, just an hour lying down makes my evenings so much better, it helps my back, feet & neck no end & stops me being grumpy. I have OA as well & that has a go at night, though it's constant at the mo until I see my GP as I've had to halt my NSAID. I'm already noticing my DIP joints changing shape, those that weren't already affected.

Do make the effort & go out in the fresh air. Wrap up warm & watch the world for the other side of the window.

RD does have the potential to affect any organ but if we're well controlled & do everything we can to keep as heart healthy as possible eat a good balanced diet, exercise according to our capabilities then we've can blame ourselves can we? Cardiovascular checks are (or should be especially if you're taking a med that could take you into to higher risk category) done every year. I'm higher risk because both my parents had heart disease & my LDL cholesterol is in higher risk group so take a statin. We're not just left to our own devices, if it's necessary we'll be taken care of be assured so no more worrying about that.

Increases in weight happens when we're sedentary, once you're well on with your meds you'll notice you start moving more & that all helps toward shifting the pounds most of us are apt to gain when not doing so well. Even if you don't snack more & eating as we were we're bound to put on weight, you're unable to walk as far as you ordinarily would. Once you're off the steroids you'll be less hungry, it is a known side effect, not adding weight but an increased appetite which is of course what leads to the weight gain. So, work on all these & the anxiety part of your brain should be a little lighter at least! Do things that help you relax, whatever it is. Some find the adult colouring books therapeutic, you can use thick pens if you don't choose the intricate designs.

Again, you're nearly there so please do stop overthinking about things that may never happen. All your joint problems will be taken care of for spring/summer, then you'll be able to enjoy the more temperate outdoors. Please whatever else you do get changed out of your pj's. They're fine the odd duvet day but if it becomes the norm it's not a good habit mentally.

[New50]

I know what your saying I bought some fantastic sports gel insoles which help as there soft and cool against the swelling but I want to have a relatively normal day when I get up. Just my feet and brains have been struggling. I had my mri on Tuesday so waiting so see what they say. Xxx

[helixhelix]

Try to stay positive. When I was diagnosed I could hardly get out of bed. Nearly every joint was swollen and inflammed, I felt exhausted and the pain was horrendous. Once we found a treatment that worked for me I improved much more than I had thought possible. Now I'm 95% normal and can live completely normally with no pain whatsoever from the RA.

It can take time to get there, but it's possible for most of us.

And really don't worry about shortages of medecines. There's nothing we can individually do about it, and even if you encourage your doctor to select a drug that's UK made some of the ingredients may be imported so not much different from something made elsewhere.

[Ruth12345]

It is hard when left with our body and thoughts at this time. We do understand and you have been given excellent advice by nmh & understanding from Becky. Just know we all understand and many have been through what you are going through. One of the the hardest times is where you are now and it is a slow process. You will improve once your medication is sorted out. Be kind to yourself, pace and rest. If you have ever thought that there is a book you want to read that you have not had time to, well now is that time.. Dont read dr google and if you want to read cluck on the links nmh has put for you, nmh and many others on here really know what they are talking about. Just know you are not on your own. Take care and as I say please be kind to yourself.

[Hidden]

I’m sorry that you are feeling like this New50. It is very difficult whilst you are waiting for results and for doctors to decide what they are going to put you on. Please try not to worry about what will happen in the future as the chances are that with the right meds for you you will not be in the situation that you think you will be. The first med they try may be the one that works for you, you never kniow and that does happen for some. Drug shortages may or may not happen and even if they do then there isn’t just one drug that does one thing there are many that act the same. Your gp can change you to an available one to do the same job. I’ve long ago stopped worrying about something that may not happen. Whatever happens will happen if we worry or not.

You are in the right place for support as many of us have been in your situation when we first became ill. I myself couldn’t get myself out of bed or dress myself etc and spent a lot of time doing nothing stuck indoors with just the tv for company. It’s very hard to feel positive about anything at those times but don’t push yourself too hard, you need to learn your limits so you don’t end up suffering even more. You will get a diagnosis and the doctors are trying to help you, it’ takes time to get there. Keep talking to us or ring the NRAS helpline for a chat whilst you are waiting. We’re all in this together. I’m glad you are able to come here to talk and I hope we help in some way. x

[Mmrr]

I can empathise with your situation, my mobility is still very limited over 2 years after diagnosis and I'm still trying out different medications. But things are better than they once were. It takes time but things will move on and you will improve.

Some GPs seem to do okay, but most have very, very little knowledge of rheumatology, the rheumatologist is the person who will move things forward.

In the meantime all you can do is listen to your body, try to keep the joints mobile, but don't exert yourself. Try out different approaches, some people like heat, others cold compresses to sooth joints. Warm baths (if you can get out safely) or showers. If you have access to a spa at the swimming pool they can be very soothing, if you can manage that. I find if I'm feeling very hot and bothered, regular 4 hrly paracetamol takes the edge off the heat too.

We all understand on this forum, so do come online.

[AgedCrone]

It very much depends on what you are prescribed....but In the UK the NHS sources drugs from all over.

Are you asking because you have been reading about drug shortages because of Brexit?

If I were you I'd concentrate on listening to your rheumatologist & not worry about where your prescribed drugs come from. I have found the same named drugs often come from different sources, but they contain 99% same ingredients.

The important thing is to concentrate on getting the meds that suit you.....