feeling terrible

dreamdaisy

Hello, how are things going? I hope you had a pleasant Easter. DD

stellabean

Thanks DD I hope yours was good too. I am still very nauseous and have indigestion most of the time I already take 3 omeprazole a day.
We had to attend a funeral on Thursday which involved travelling for over 6 hours and it wasn't much fun feeling so sick all the time. I have tried to get aGp appointment but was told to try on Tuesday as they should have the rota by then for the week commencing 6th May. I am concerned by the amount of hair that I am loosing though this has lessened a very little since I reduced from 12.5 mg.
I have spoken to a lady in the village who I know has RA and is on subcut, she has told me of the struggle she had to get it and how long they made her take various doses or tablets from different companies. She was surprised that I am so ealy in treatment to be not being seen by anyone from Rhumetology department. She has said she is with the other consultant at my unit and he is as bambastic as mine. I am not looking forward to taking my MXT tonight at all.

stickywicket

I've been re-reading your thread (I'm on holiday so time isn't a problem ) and it seems to me you have more difficulties than just those of rheumatology. I'm wondering why your GP is content to leave you on a high dose of omeprazole when it's clearly not cutting the mustard; why you haven't been referred to a gastro-enterologist; when you last had an endoscopy and colonoscopy?. Yes, without meth you might have fewer gut problems but you'd still have them and other DMARDS might be equally irritating. You need someone to liaise for you. Your GP can't do anything about the meth but he or she could try to ensure you get the best treatment for your gut and also ensure the rheumatologist is up to date with your problems.

Your hospital sounds to be in the doldrums. At best, a new locum might be exactly what you nend but, frankly, if nothing is going to change, I'd be seriously considering moving. Yes, moving house. Drastic, but our ongoing medical problems only increase and multiply as we age A large teaching hospital will, almost always, have better consultants than a small local one. I have a very good local hospital but, because they can't deal with complex orthopaedic problems, I still have an hour's journey to my orthopaedic appointments.

Maybe you just have to be more pro-active and put in a complaint - not to rheumatology but to whoever deals with them at the hospital. I think the GP and maybe a colonoscopy would be my other line of approach, though.

BettyMac

Hi Stellabean

Your rheumatology department seems woefully understaffed.

I’m wondering if contacting PALS at your hospital could help you get better care?

https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

dreamdaisy

Aileen, much-beloved cousin I had known all my life, was due to be cremated last August on one of the hottest days of the year. It would have meant a four hour round-trip or, as my kind husband suggested, going down the day before, attending and either returning or staying on for a further night. I weighed up the implications for me and decided against going. We went instead to the local cemetery and sat there for an hour, in the shade, on the bench dedicated to the son of a old neighbour and chatted about her. Six months later my Aunt died, I made it to hers because it was only the OA that would be affected plus she was the last link to my mum.

I have learned that there is nothing I HAVE to do, there are things I can choose to do and, if I am punished after, then so be it but to be needlessly punished to satisfy social niceties? Why? It is The Spoon Theory in practice and if anyone has a go at me they are swiftly put in their place. I am the one who is living with the constant pain, tiredness and all the other dross, it also affects my husband (Why make myself worse for him? He already has enough to deal with.)

We had to move house as our old one was becoming increasingly impractical for me but it was literally five minutes from the hospital which was superbly convenient. My only stipulation was that the new one should not be more than a thirty minute drive from the hospital and it isn't: it's around ten. Ill-health is an expensive business emotionally, financially, physically and socially. DD

stellabean

Good news I managed to get hold of one of the rheumy nurses this morning and made it clear I had had enough. It was obvious to me that the form I had filled in at my last hospital appointment hadn't even been looked at. She has admitted that MXT isn't right for me and I am not to take any more, and they want to give me something else when she has spoken to the consultant. I am made it crystal clear I do not feel safe in their care being so early in treatment and having no direct contact with the department.
I also said it was obvious that my cancelled appointment from 7 weeks ago was not going to be remade and I felt that I was lied to when told I would get a new one. I have been offered an appointment with a pharmacist to discuss what medication they want me to try and said that was not adequate. I have accepted an appointment with a locum who is only going to be with the department for 6 months , that is next week. Lets hope they have some more caring ideas that the consultant who prefers the patients to suffer side effects. I am still trying to get GP appointment and will discuss transfer of care then. Thanks everyone for your help I'll let you know how I get on.

BettyMac

That sounds like a wee bit of progress!
Here's hoping the locum knows his/her stuff and they can get you on a better regime - ie one that works and doesn't make you feel so awful.

stellabean

Thanks BettyMac I hope so too. I have had less success getting GP appointment I have had to leave a message for the GP about changing hospital as there are no appointments to be had.

stellabean

Just had a phone call form rhumey nurse the consultant wants me to start Tofacitinib, I have been told to go online to look it up before seeing the locum tomorrow who may also have his own idea of what I am to take next. So we shall see what tomorrow brings.

stickywicket

I hope it brings good news. I've not heard of it but, as I see it's used for both RA and ulcerative colitis, it sounds as if it might be kinder to your gut than meth. I hope so.

dreamdaisy

I too hope that this will make a positive difference, please let us know how you get on. It can be difficult for those with overlapping conditions to find a med that doesn't upset one thing in trying to 'mend' another. DD

stellabean

Hi all just back from hospital. I saw the locum and he has decided that I don't have any action disease at the moment, my pain is due to OA on the fritz. CPR is down to normal range again so he wants to see me in 6 months with the instructions that is any swelling occurs or I am worried about things to contact them. I am glad I would not let them start that drug without me seeing a doctor or I could have been on a drug I don't need at the moment.
Thanks everyone for the help it is very much appreciated.

stickywicket

:? So does this mean you are actually in remission and won't be on any DMARDS? Woo hoo

stellabean

Yep that is right no DMARDS for now review in 6 months. IT will give me time to get rid of this dam rash which I have had since December.

dreamdaisy

So the possibility that your CRP being back within normal parameters having nothing to do with the meth has been ignored? What about your ESR? This all sounds very glib to me, an easy way out for them because you're a complicated case and leaving you precisely nowhere.

In your shoes I would have another blood test in six to eight weeks just to confirm that the inflammatory markers are behaving, I am pleased that you can stop the meth but am far from convinced that it's all down to OA. I apologise for sounding negative, and I sincerely hope you are able to prove me wrong, but my gut feel, based on everything you've told us, is that there is still something not adding up. I truly hope you can make me look a fool, I would love to be one. DD

stellabean

That's okay DD I and the other half are not fully convinced either. We intend to monitor my joints closely ( the pain will tell). My ESR is 2 and CRP>4 the first one in the book I was given was 13 but the 2 previous ones are not in it that was after in IM steroid .I have managed to get GP appointment after hasseling with receptionist for next week but again it is a locum.I,ll let you know how I get on.

dreamdaisy

Thank you, I admit I have been fretting a little about raining on your parade! Mine were in the 160s at their worst, forbears they rarely dropped below the 50s. Once I began humira supported by meth they dropped within a fortnight to single figures and often were too small to measure so that's how I knew the regimen is working. I have had bloods which show no disease activity but I have been lousy and laid up, alternatively I've been fine (still in pain tho) and the bloods were anything but. It's a nightmare which is why I prefer the OA, it's much easier to manage. DD

stellabean

just an update, I am glad to say that the nausea and indigestion have settled down and the rash is at last fading except for around my knees but at least it has stopped tingling. I still feel really tired in fact I am usually asleep by now in my chair with my cat on my knee. Of course my joints remain stiff and painful but that is normal.

dreamdaisy

I'm pleased the nausea etc has subsided, that in itself will help to make you feel better. As for the tiredness that is common to many of us on here, I'm typing this from my bed which I'm in for comfort, warmth and recovery purposes after severely overdoing it yesterday. DD

stellabean

Sorry to hear that DD it is hard to pace yourself when the weather is so good. I have to stop myself and remember I am not able to do what I could only a year ago.
On Tuesday I got on the quad to spot spray the hay field ( we only have 1 small field to do) I had great trouble with my hands and the controls I just got the sussed out and the flipping quad burst into flames. Luckily I had climbed off to look at something and Hubby was able to throw my bottled water onto it so just some wiring frazzled Chariots of Fire came to mind. I only use quad for spraying Hubby plays with it rest of the time I am better at plant ID as we have a top tier hay meadow. I was very tired after the bit I did do though. I have the next few days while we find parts for a 22 year old quad so it is internet searching for me now.
Rest up for your next excessive day DD.

dreamdaisy

This was not weather-driven, it was all entirely indoor and the mood struck. I have had a lifetime of being limited in what I can do but can still occasionally get it very wrong, especially when sparkly things are involved. I LOVE a bit of sparkle and twinkle, it brightens both my days and my nights. I have never been near anything which caught fire and I hope I never am - thank heavens you weren't aboard.

You sound as though you are involved in farming or running a smallholding: that must bring a huge amount of pressure on you to do things and get stuff done, it can be very hard to adjust one's behaviour if it hasn't had to be done before. I got up but found I was being tempted into doing things I didn't need to and that was not aiding rest and recovery so I returned to bed. I've done the hard yards of working when everything was screaming at me not to, now I can be more self-indulgent. My husband has spent the day working on his OU History assignment which is a good use of the time he wasn't expecting to have at his disposal.

I hope things improve soon and, even though I spectacularly failed to remember my mantra of 'stop when you think can do more' I urge you to adopt it. Aren't I a cheeky mare? DD

stellabean

I keep my 29 yr old horse on my friends land along with her retired racehorse and I look after her horse for her as she has had several strokes. I haven't ridden since 2000 after I was assaulted at work as a nurse but I was persuaded to keep my boy and it was good advice animals can give us so much. My friends land was rented out to a famer but he damaged it and it has taken several years of low impact care to get it back. It is a hay meadow in the pennines and is in the top 95% because of the diversity of plants. But it needs careful spraying to get rid of "undesirable invasive weeds" or things that are poisonous.
We used to have a farmer make the hay but one year he cut it and ruined it then the next he wanted to make it into massive bales we couldn't handle so Hubby has his own old machines and makes our hay. It is lovely in the depths of winter cutting open a bale and it smells of summer grass ,the horses love it too.
You are right it is hard to now when to stop or not even start something, I find when I have a lot of pain I feel driven to do things to distract me and it is hard for my to do nothing. I find now if I sit for long I fall asleep even when knitting!!I' ll try to remember your mantra.

dreamdaisy

Oh I see, yes hard work indeed but hopefully rewarding. I have never lived with animals due to severe asthma; The Spouse has always dreamed of having two black labradors, and I'm sure we will at some point, but they will live outdoors and be allowed only into the kitchen. Plants were also adept at trying to kill me (my Ma once nearly finished me off thanks to a vase of irises) and I I try to avoid them too.

If you think you can't you won't but if you think you can you will. I have a project underway today which would take many people an hour or so, it's going to take me around four but so what? I'll do it on my terms, in my own way and be rewarded with a sense of achievement that those who can just do things may not often feel. DD

stellabean

I hope you enjoyed your project DD it is the little triumphs we get that keep us trying. I garden with a hand trowel sitting on a wheeled box or my knee pads. It is amazing just how much damage I can do to weeds and I enjoy raising things from seed.