Having a panic..

LemonMerigue · 27. Jul 2015, 15:52

Firstly, sorry I haven't been around much. Life has been getting in the way a bit. I've been looking for jobs mostly. I started one last week but 3 days in, it was just too much for me so quit. So that went well.

Secondly, I've been trying not to get myself into a panic but I have to be honest in saying that it's absolutely not working. I'm in full on panic mode. About 2 months ago my rheumy upped my dose of methotrexate (from 6x2.5mg to 8x2.5mg) and he was very confident it was going to start making a difference, more so to my skin. He said it would take 2 weeks and my skin would clear up. 2 months later and my skin is worse than ever. The plaques on my forehead haven't got worse thankfully, but my psoriasis seems to have completely engulfed my scalp (rather than the few patches I had before). I have been getting plenty of vitamin D (with all this lovely sunshine) so I'm so upset it's not doing anything. And to make matters worse, I got a letter from my rheumy nurse saying my Liver functions weren't looking good and that I need MORE blood tests (I've had one a week for nearly 2 months). It did explain in the letter that this isn't necessarily because of the medication but they obviously have to monitor the situation further.

I'm so unhappy.

dreamdaisy · 28. Jul 2015, 03:48

Oh dear, poor you. I empathise, I remember my early days and frustration was the name of the game, that feeling of trying and getting nowhere is demoralising.

The first thing that strikes me is that your dose of meth is obviously not cutting the mustard. Is meth your only DMARD? Are you taking folic acid? I apologise for not remembering these salient details but I'm not too bonny at the moment. I remember what the docs have told me in the past, I now routinely ignore their messages of 'hope'. They deal with theory, I with the reality. There's a big difference. Of course he thinks that the increased dose will help, and maybe it will, but obviously disease activity is not, as yet, adequately suppressed. Have you let your rheumatology unit know what is happening?

I endured fortnightly bloods for years, and clearly remember being contacted whilst on holiday for an emergency blood test at a local health centre. Outrageous but, as it turned out, necessary. I have also been recalled for re-tests by the GPs because they don't like the results whereas rheumatology were quite happy. It is annoying.

Rough patches pass, they always do, but they seem to hang around for far longer than the better times. They probably don't, but . . . . . Let your rheumatology unit know that your skin is far from happy, that you are far from happy, and hopefully they will call you in for a meds review. The only time I took just one DMARD was in my first three months of meds, way back in 2002. Halcyon days! DD

stickywicket · 28. Jul 2015, 05:29

No apology needed. People are often not around. We tend to hope that means all is well but it's not always the case.

I'm sorry the job didn't work out and I guess one of the many reasons for panic mode is the fear for future jobs. The feeling of lack of being in control is a scary one with the body doing its own thing regardless of what we chuck at it. Maybe your rheumatologist's optimism over the increased meth dose was a little misplaced but, as DD says, if meth is all you're taking, you probably need something else with it.

I'm sorry about the increased bloods. It's a pain but a very necessary one. They are ensuring all is safe, if not totally well, and that's important though these things do serve to keep us focused on what's amiss in our lives rather than what's going OK.

I think you should ring your rheumatology helpline for advice.

As for Vit D – yes, there's plenty to be had in sunshine but sunshine is not good for us meth-users. Is it your psoriasis or a meth rash? Time to check.

LemonMerigue · 28. Jul 2015, 06:49

Yes, sorry, I should have mentioned that they also upped my Folic acid. I now take it every day apart from the day I take my meth. I'm on 5mg per day. And yes, meth is currently the only DMARD I'm taking. They have also stopped giving me pain relief and told me I'm fine with paracetemol or cocodemol. Neither of those do anything. I spoke to my rheumy and he said that my GP is the one to talk to about pain relief as he doesn't have time to talk to every patient about pain relief. I also spoke to my GP about possible depression but he dismissed it as being "normal" for someone with my condition.

It's definitely not meth rash with regards to my skin.

I don't really know what to do. I'm going round in circles with them all now. They seem very reluctant to give me appointments outside of the ones they schedule for me.

stickywicket · 28. Jul 2015, 07:48

Don't be discouraged from contacting the helpline about the meth not working just because they don't prescribe pain relief. It's true. They don't. Mine never has done. It's always the GP who does that. Rheumatology deal with the disease itself, not the pain.

You say you've tried paracetamol and cocos. There are other pain meds. Indeed, there are (I think) 3 strengths of cocos. It tends to boil down to what you find an acceptable level of pain. The stronger the dullers the more we are removed from not just the pain but from everything and everyone around us too. It's a matter of achieving a balance where we feel that, mentally, we're functioning reasonably despite the pain.

Lots of people with arthritis are on antidepressants. I guess depression is a normal reaction to a life-sentence. There are different views on them, especially for long term use. If you feel you need them I suggest you try a different GP in the practice.

Rheumatology departments are very busy places with lots of patients so they won't want to give you an appointment for something your GP can deal with. Indeed, they mightn't want to give you an appointment for tweaking your meds. They might just give advice over the phone. On the other hand, if your ALT levels are currently up, they might prefer you to just sit it out for a while until they go back down again. The Waiting Game is a constant factor of our lives :roll:

barbara12 · 28. Jul 2015, 09:58

Hello LM and like the others have said dont apologize for anything..Im afraid I cant advice with the med and PA but I see the others have advised you..please ring your helpline and let us know how you get on...

dreamdaisy · 28. Jul 2015, 13:59

It's my GP that deals with pain relief and yes, paracetamol or cocos don't seem to achieve much because they don't have the clout, that's why we call them dullers because, like all the other stuff, they dull the sharper edges, no more. Pain is the Japanese knotweed of our lives, end of. We're all in it, all feel it and all have to deal with it as best we can. It's a challenge to say the least.

Whatever measures we take the relief is only temporary. Pain-free is an unachievable goal but it helps that if we are stronger mentally we can deal with it better. I plunged into depression when my OA was diagnosed in 2011 so went to the GP. 'At last' was her reaction and she put me on a low dose of Citalopram. I had plans for three months, four years later I'm still taking it as advised by my rheumatologist. Your GP is not living with your conditions, you are and he should listen more attentively to your concerns. Depression is not normal and is another load for us to bear.

I have to go and cook. So NOT in the mood! DD

GraceB · 28. Jul 2015, 16:13

I've got OA and not RA so I have no idea what you are going through. However, I do understand pain. It's a tenacious so and so and it gets so tiring. Personally, I go to sleep being in pain and wake up in pain. If I'm really "lucky" I even get to while away some of the night - awake - in pain!

Please persist with your GP. S/he is the one to deal with pain control for you and if that means going back every week, so be it.

Take care,
GraceB

LemonMerigue · 29. Jul 2015, 09:31

Thank you for the reassurance. I appreciate it more knowing that you all have your own struggles and you take the time to help others. It means a lot. I'm going to put my foot down. It's hard to do that during the summer holidays since I have a 6 year old glued to me but I can't keep feeling like this. I really had hoped I wouldn't have to keep fighting Doctors about this. I had it for months just to get a diagnosis. If I hadn't kept on at them I dare say I'd be in a lot worse of a state than I am now because they just seemed totally disinterested.

*sigh* I really don't have the energy for it.
Thank you again.

stickywicket · 29. Jul 2015, 09:48

You are not in a good place right now, are you?

May I just suggest, for best results:

If the arthritis is bad then contact the rheumatology helpline BUT, if your liver results are on a blip, they may not want want to increase anything medswise until that is resolved.

If the pain is at unacceptable levels ask your GP (not your rheumatologist) for a change of dullers.

If depression is a big factor ask your GP again (or preferably a different one in the practice) for some anti-deps.

I hope you can get some help.

dreamdaisy · 30. Jul 2015, 02:30

Over my fourteen years of medications I've tried varying combinations of the following: sulphasalazine, methotrexate (tablets and injected), leflunomide, cyclosporine (all DMARDs) inflizimab (infusion), Enbrel (injected) and humira (injected) all biologics. NSAIDs have been celebrex, naproxen and diclofenac. Pain relief cocodamol (currently 30/500), tramadol and liquid morphine. The one constant throughout has been pain and once I understood that the trammies and oromorph weren't doing anything much above the effect of the cocos I dropped them.

My late Ma never grasped the concept that despite taking all these drugs I wasn't improving. For her you took some pills and got better, life was very simplistic thanks to enjoying good health. She never understood that boosting my immune system (her answer to everything) would worsen the PsA. I think you do need a meds review, FA is not a treatment as such, just a support for the body to help it cope better with the side-effects of the medication. Apart from the skin how are your joints? DD

LemonMerigue · 30. Jul 2015, 16:07

I'm really not, Sticky. I'm incredibly fed up of life. I'm 25 and the proverbial is just hitting all the fans. Or at least that's how it feels. My job search is going terribly. I had 2 Interviews this week. Got neither of the jobs. So I have no money, I can't even drown my sorrows online shopping. *sigh* :roll:

I managed to get a phone call appointment with a GP yesterday and got some pain relief reinstated. They've given back my repeat prescription for 30mg of Codeine. I spoke to a female GP rather than my usual GP (as he's on holiday) and she seemed genuinely shocked that they had even stopped giving it to me. After I spoke to her about it, she didn't have time to discuss much else as she was running behind but said to call next Monday and get an appointment with her to address other issues. She was so lovely.

DD, I think that's why I'm finding it so hard. Mr LemonMeringue means well but he's always so overly optimistic that he gets me thinking all these pills are going to cure me. Even though I know that logically, they're not. He tends to make me feel like a complete pessimist for saying otherwise when the reality is, I'm thinking well...realistically. He doesn't really understand. I don't think he will. He's too determined to look at the bright side and give me hope that one day I'll feel normal again. It's quite frustrating.
Other than my skin being a mess my joints are still very sore. They've definitely been worse though. I have noticed that more knuckles on my (right) hand have started stiffening up and being swollen and hot. Which I'm not happy about.

stickywicket · 30. Jul 2015, 17:04

Well done on making that appointment! It often pays to see a different GP and I'm so glad it has for you. We are under no obligation to see the doc whom we're officially under so, if you get on better with this one, I suggest you keep on seeing her.

As for your OH - men are fixers. They like to mend us when we are e broken and don't quite grasp that, for some of us, that isn't going to work. You are clearly depressed as well as in pain and your bloke's optimistic stance might be his attempt to jolly you out of it. Of course it won't work. It's irritating and it makes us feel a total failure but arthritis does affect everyone in the household albeit differently. Have you tried giving him some of Arthritis Care's publications to read to help him understand it all better? Or The Spoon Theory? Could you take him with you to your next appointment? It might help him understand.

LemonMerigue · 31. Jul 2015, 10:20

I've tried all sorts to try and get the Mr more involved but he thinks he has it all sussed out and is digging his heels in a bit. Quite frankly I don't have the energy to convince him otherwise. Once he's made up his mind, he can be very stubborn. I appreciate him trying to lift me out of it but I do wish he would just bog off sometimes. That's probably harsh but that's how I feel. My little boy realised this week that my arthritis is never going to go away and he's been very upset so that's made me feel a million times worse. He woke up in the night on Wednesday night and when I asked him what the matter was he sobbed his little heart out telling me he wished I was better and I never had arthritis. </3

I'm hoping to get an appointment next week to see the Doctor to talk about depression.
Thank you for the words of encouragement.

This week has been so rubbish and it's nice to speak to those who get it.

stickywicket · 31. Jul 2015, 10:44

That's a very good plan for next week.

Arthritis is, indeed, with us for life but it doesn't have to be a bad life just a different one to that we had planned. I honestly can't remember how it was for my kids when they were young. I'd had RA for nearly 10 years before I had the first so they just grew up accepting that Mum had arthritis, wonky fingers (No DMARDS back then) and sometimes asked them to put the washing out / take it in / wash up etc because she was tired and achey, I think they've come out of it all pretty well. They're both good Dads and very inclusive about anyone with a disability. Maybe your little fellow doesn't need to know all the harsh reality just yet. After all, you're still young, even if you don't feel it. Interesting research is going on all the time. They could, conceivably, find a cure in your lifetime. Let him hope.

That will be hard while you yourself are so depressed. You are doing exactly the right thing about that. I hope next week's appointment will result in your feeling more optimistic about the future.

LemonMerigue · 31. Jul 2015, 13:18

I've tried very hard to "shield" him from the reality of it but he's too smart. He worked it out by himself really. He has known for some time I'm not "well" and even for a 6 year old he's been very helpful. I've told him he doesn't have to but he said he "wants to help mummy get better" so he's started keeping his room tidy and putting his clean clothes away. (Good training for the future anyway I guess!) He's such a sweet boy. I'm very lucky to have him

Will update next week after my appointment. Fingers crossed something positive comes out of it.

stickywicket · 31. Jul 2015, 14:04

Sometimes kids can be heartbreakingly direct. When my 3 yr old said he didn't want to go to nursery any more after the birth of his brother I thought he might be jealous so didn't force the issue. It was only a year or two later that he said "I didn't think you could manage without me, Mummy." Ouch!

I think our disease makes them more sensitive but that sensitivity can be channeled into good directions. Yes, yours does sound to be a very sweet little lad and, with luck, he'll hang on to the kindness and ditch the fear.

That same, kind 3 yr old of mine, when he was in his 30s and visiting from California, and I was just out of theatre with a new THR, groaning with pain, advised me to imagine myself on a beautiful beach with the sun in the sky and a blue sea rippling onto golden sands.

He delights in telling everyone now how "My Mum once told me to eff off."

Having a panic..

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