I wish this freezing UK weather would b***** off. I have gone downhill so much and if I try go out I am in agony for ages and take two days to come round. The all over relief of my steroid injection I had six weeks ago worn off apart from to the knee itself whichnis ok. Well at least I got one half decent joint.
I dontbknowcwhstbi csn do but ride it out as I am taking full dose Paracetamols and Diclofenac and also Fentanyl 25 mcg/hour but they only take the edge off it. I csn feel a little relief but pain isn't under control. Bi feel myselfvgoingbtonthstbolace called Despair followed by a visit to panic and then probably call in to that regularly visited place we all go call Freakout. Think I am there now. Haven't even the strength in hands to break a piece of bunny off to eat!
Seriously I don't know how I am going to cope with the insanity of even more of it until afterbmy dental treatment on 9 April. I can't start Enbrel till after any possible dental antibiotics so that takes me to 16 April.
Worried Enbrel may do diddly squat for me and not work fast. Just having a freaking out session sorry.
I wonder if my GP would change my painkillers/anti inflams but difficult to do when there's Fentanyl involved too. I used to take Tramadol before but notbeithnaparacetamol or the Fentanyl transdermal. They did wonders for the pain but made me zombied. I just don't want to be on ineffective painkillers whilst waiting for Enbrel to work.
I am at my worst since it first started. I also have a osteoporosis bone scan on Tuesday and hope I csn lay still flat on my back for 15 minutes.
The seizing causing immobility with this condition is just horrendous. At least my husband can take me Tuesday as getting from A to B alone is a mammoth task.
Sorry for my freak out. Hope you have all had a good Easter.
Julie xx
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Hey Julie, so sorry to hear you're in so much pain & worry! What I wonder is could it be possible in any way for you to get another steroid injection - one of the ones into the butt if all your joints are active? Sounds to me this would be best if your painkillers don't work to control the pain and do nothing for your swelling and inflammation?
My rheumy and GP said that they use them for people who get started on DMARDs and need something to tidy them over until they take effect. I got one before I started MTX (and many in between when nothing worked to calm the inflammation). It shouldn't be different with biologics as far as I can tell! This doesn't sound like something you can carry on until you get Enbrel injected :S Or possibly a short high dose steroid course? Is there any way you can get the injection done or oral steroids prescribed by your GP? I did it once when I was in a bad way and my GP had the injection done rigt there at the practice.
I'm sorry if this doesn't help! I hope the 2 weeks until Enbrel are going by really fast and that all this will be a distant nightmare soon xxx
Christine xx
oh julie, im so sorry you are having a very rough time.If i were you i'd go back to the GP and explain your situation and see if he can change your painkillers, as you cannot possibly wait till 16th April hun or you can ring the nhs help line if you cant bear to wait for GP to open they are really good. : ))
Steroid injections are good when you have them but rubbish when you come off them. I have now refused to have them again as i feel they give you a false sense of relief which then leads you to go mad so when you come off them you have over exerted your joints leaaving you in further pain, i had mine a few weeks ago and it is only just starting to work, but i am going to take it steady as i know what happens when it wears off lol .
As for your scan i would ask your GP for something to relax you just for the scan if you explain your situation he may be able to help. For now i would keep having hot baths to relax the muscles with muscle soak bath solution, and rest as much as possible, but try and get in with your GP or ring NHS asap. In the mean time soft hugs and i hope you get some relief soon :} XXXlena
think steroids too/ you will hopefully be A LOT better with ebrel x
Hi Christine, thank you for your kind words, you are a sweetheart. Absolutely. I am sadly not allows any more steroid injections as the rheumy said over the past three years I have had to have so many I have had my limit. She doesn't want to give me any more. I only got my knee done as I phoned her PA early February and told her my life was not worth living as I was immobile, housebound and reduced Ti so much insanity in Tje say t day living that I couldn't been climb my stairs. As I had had an injury on the same knee too and my GP pleeaded my case also I got my injection. Tht is the last one I wa told. I am not sure if that means ever but think they want to assess the bone scan first. It is a DX scan I
think tomorrow.
I tihkthereforevthat oral sterids will be a no no then if then refusing me injectable steroids. I asked the GP and ?registrar and Rheumy nurse what eill happen if my Racflars bacmup badly before I get Goijg on Enbrel and my painkillers etc are not working and there hasn't been any recommendation or real answer on that. I think they want me totough it out and shut uo and put up.
Believe me, k am tough withvthe widespread joint damage and inflammation and this is the only tike I have freaked out and cried really over seventeen years of it so it shows you it is horrid.
I can try g and sit in the open surgery Thursday/Friday morning and ask if my pain management can be addressed. If the go says see tour consultant then I am in fora,jg wait as the next routine appointment scheduled is 13 May. I will have to leave a veryassertive ,message on the helpline about my painkillers if Tje GP cant do anything.
I also think je will ne relj rant to do so knowing I have a root canal next Tuesday which will invoke four shots of dental anaesthetic and probable antibiotics (Metronidazole I think) so I dojt think he will tweak anything with that going on. Bad bad timing. Need the dental, so I can start the Enbrel. I tried to sort the dental November but bot put bsck and delayed by the dental hospital. They were supposed to pull a back tooth (not bad) by GA as my dentist could not do it and he he can't, no one can! They were supposed to get bsck to me re a GA and pulling this low tooth which is it and, just hard to fill. Worn down. They didn't snd i had to chase it. Then my RA flaring has delayed it.
Anyhow. I would take oralsterids forcthe pain on a shirt term course in a flash if theh offered, but I think EIL say I have had too many steroidal. Think I have to ask my GP how I can go on without adequate painkillers until Embrel works. I will be back in that very dark place again otherwise.
Sorry for my typos - I am not good with my hands. Fingers are
massive.
I will also write a letter. Think to my consultant and say I have very big concerns about being left ax I am in current non adequate pain killers especially if Enbrel doesn't work as soon as hoped. It is causing me to flare i am so stressed trying to move. I did try to ask this and preempt this about a month ago but ...... Hey what do I know .... Only my body. I think if my rheumatologistbgets something in writhgbrrim me it could be a good thing but it is just now long it takes to get to her desk. From admin opening it to it arriving on her desk .... Could be two weeks.
I will try GP later this week and do a letter to drop off at hospital.
Oh yes I imagine they'd prefer you to 'tough it out' but that's just not on. Like you say you won't know how fast the Enbrel works and they need to have some kind of Plan B if it takes longer than expected/hoped. They can't leave you alone like this it's just a disgrace. If you manage, going to the GP is probably wise, even of he doesn't give you better painkillers or steroids it's still showing your rheumy you're really need this sorted out asap.
Re steroids: I know what you mean about getting too many steroid injections! I think regarding side effects it's better to go on a short but high course of oral steroids as the injections in the butt really put a lot of stress on your body. HOWEVER, I think it's a risk vs benefits assessment. This pain and swelling and inflammation is putting your entire body (and mind!!) under a lot of stress as well and I do think in such cases in NEEDS to be considered. I've been offered steroids routinely, they've always said that I've had too much already but that if you look at the situation not giving them is worse than what could maybe happen if I took them. I also know that if you have Lupus or Crohn's disease you're sometimes on high doses of oral steroids over years. And for you it would only need to be a short course so you'd taper off them the same time Enbrel is supposed to do its magic.
Just reading this makes my joints hurt! It sounds so painful and it must be so frustrating being fobbed off like that!! Definitely write a letter and state that you had seen this coming and were trying to prevent it by asking how they would address this situation but got no adequate response. I mean what are you supposed to do?? Just disappear to some kind of limbo where you feel no pain until it's time for the anti-tnf injection??
It's frustrating I can't do anything that really helps just know that I'm thinking of you and everyone on this forum who is in pain and I wish I could take some of it istead as I feel really bad that I got sorted by being able to move to somewhere where they take health care seriously.
Love and all the best of luck to you, Christine xxx
Hi Lovely Lena, thank you for your kind words and advice. I will try Ti see GP in morning open surgery later this week but that is an ordeal getting there in the mornings. Won't be a bookable appointment for over a week given the Hols.
As I detailed to Christine I am not allowed to have any more steroid injections having had my limit I have been told.
I agree with you about the highs and lows of them. Feeling great bit knowing it is inevitable the bad tikes are coming bsck. Been there too often as you obviously have. I understand your reasoning behind deciding no more. l couldn't have moved without them.
Hope you alright Lena and enjoying the Easter Hols. I must be a. I stringer in my hands whilst the Diclofenac are first working, as i could break my choc bunny easier today and have been finishing him off. Have to distract myself somehow!
I think also I will phone the Rheumy nurse just to check she has registered my with healthcare at hime as if that is delayed and I have to wait even longer, I don't know how I would cope. Guess I would but very badly. Should I have to? A big resounding NO.
Scan tomorrow lunchtime and my worry is I can't straighten my arms out for fifteen minutes at each side. I wnder if I an spoked them witha pillow under each. I never let tem drop to esch side this way or sleep on my back. Too uncomfy. They spasm. My legs and back etc are fine to be like this no problem, justvthe shoulders. I know it souds daft but often people doung the scans don't realosecwhat problems people have. It is a DX which lasts 15 minutes. I had ine for testing for osteoporosis in 2003 which is why Rneumy wants another one to see what has happened etc.
Anyhow lets hope o can keep moving as I have to take my 92 year old Mum with early Alzheimers to a hearing aid test appointment at the hospital Thursday. Also the cat is having tests and vet visits for chronic diarrhoea.
Spoked them? LOL ... Supported them. So sorry for insane typing - no one would believe I have an RSA Advanced Typing Teachers diploma! They would remove it from me for sure if they saw this drivel I am typing. (Ah I blame this bludy iPad!!)
Hubby took me for a lovely drive into the hills between Yorks and Lancs to see all the snow still there. We went for a yummy hot choc on way back.
Thank you too dear Summer and Polly. I won't be allowed oral steroids if I have been told no more steroidal injections I am sure. Surely they are going to add to the build up of what they say has taken me to my limit? I would take them no prob if allowed to tide me over.
With the imminent dental and anaesthetic injections and probable antibiotics, I doubt the GP will tweak anything, but for when that dental work calms down, I think I have to ask the Rheumy and GP to address the fact I am in so much pain and will be until the Embrel works. If I have to keep at them .. Then I have to keep at them. I will write Rneumy a letter as I am sure my conversations with the other staff .... Registrar and PA will find their way back to her. I have been told .... I am sure she has a plan for you!!!!!! my hospital is normally very good but I think they don't want to do anything with me until Enbrel.
Yes you are so right Christine, I can't be fobbed off and expected to tough it out. I shall have to tell my GP this week that I am going back t thst dark place of constant pain and depression. I am annoyed too as I did mention there needed to be a back up plan. I am a good planner myself and always think in advance what could happen and try anticipate it. I shall start my letter shortly. I hope given the ststevif me in my last GP visits with such anxiety and distress from my immobility and seizing I won't be left or I know my husband will take matters into his own hands and phone the helpline and/or drive me to casualty as he wanted to in Feb.
Thank you for your support. It would cheer me up to hear some very good news from you later this week!
Christine, never ever feel bad for feeling good! I am soooo glad you are and same goes to everyone feeling good. It gives me great hope for better times again. Thank you though for your wonderful sentiment. You sweet girl. I was offered biologics so many times and in this past year or so each time I saw anyone at the hospital I was asked. Perhaps this is my punishment for holding off.
The hospital have always been brilliant with me so this will be hard to take if they leave me to wait. I will chase everything up this week. Let you know what I say in my letter to the Rheumy.
Oh how I wish for good news this week as well They told me they'd get back to me 'after Easter' I suppose in theory that could mean until next year Let's hope not!!
I do have good news though regarding the scary drug I am taking for my spotty face..it seems to work (hope I'm not jinxing it now)!! Face is looking less like a teenage warzone and is clearing up, and I've only been taking it 10 days of a 3 months course, I expect great things to happen!! Pretty sure by now MTX had its part to play in my skin troubles so now that's gone and with the help of the new drug my face is recovering, so glad!!! Just wish I'd gone to the job interview with my face the way it is now and not with all the spots and blotchiness I had 2 weeks ago..but can't change that now.
I'm glad you managed to smash and eat your Easter bunny I think I'll hunt the shops for reduced price giant Lindt chocolate bunnies when I am in town this morning
I resisted biologics as well for about half a year. I think it's natural, they're weird and scary drugs! But if I compare Simponi to MTX they're just not in the same league . Though I am sure MTX works wonderfully for some people, just wasn't for me!! I'm getting my next Simponi injection this Thursday..they put it back a week because of the holidays but I don't notice it, maybe that means there is enough still in my system from last time or the Leflunomide is working freakishly fast! WIll be interesting to get the bloods done to see how my liver is coping with the daily chemical cocktail..I need to ask them about the booze again as well, there is a lonely can of Guinness in my fridge and hopefully something to celebrate this week!!!!!
Good luck with your letter and don't hold back! It's tempting sometimes, retrospectively, to play the pain and discomfort down but if you write it while you're on inadequate meds it'll hopefully bring it home to them that they've failed you and did not do their job. I'm the same with planning and thinking ahead and I tell you it's incredibly annoying when the people in charge don't do the same! When I panned my move back I got in touch with the Job Centre but got wrong information and I ended up on the benefit I didn't want to end up on..long story but it still makes my blood boil!
Hi Christine, just back from my DX osteoporosis scan at hospital. Interrogated about calcium and
booze intake (not enough!!) etc. Was told oral steroids drain your
calcium much more than the i/js so that is why
they won't give me
them. Not at the mo anyhow. I just simply will not felt though that I have I stay as I am on the current inadequate painkillers until a biologic works. I think then are in teir minds satisfied I am passed to the bilogic nurse and that is as much as can be dne. WRONG. K don't go asah that easily! I can be very very assertive if I need to be, but I shouldn't have to when I am in such immense pain. Had a farcical struggle to undress and dress in a cubicle with a low hard plastic chair. Stood up
to do it all using my
hiking cane as an
extended limb! Glad no
one could see as I must
have looked a complete
Plonker ! I did mumble a couple of expletives
too. Only very quietly!
The scan was on my
nips and spine only as
that gives sufficient info
for my Rheumy to see
how my bones are
doing, i expect to take
supplements. I won't know for a month.
I am sure a glass of Guinness is going to boost your iron as well as help you celebrate (pleeeeaaassse let it be!). I hope you have good blood results and enjoy a drink! I had a glass of Crabbies Black alcoholic ginger ale in Saturday and it was divine. So nice and warming and quite strong but didn't taste too alcoholic. Just
lovely. Could get used to those. Ia, not a drinkers really. Just every now and then have to have some champagne or a lovely White wine. Or something quite special.
If you get something planned out and organised, you can then
Have less to stress about ...in theory ... But when you have to keep chasing people and undo mistakes they make (appointments centre at hospital springs to mind ... They are so stressed they get shirty with you when you phone! Tell you you can't have an appointment as there aren't any then send you a letter saying you haven't made an appointment and if you don't, you will ne taken off the hsooital syste snd returned t your GP for treatment! I demanded they wrote on my computer notes that I had phoned three times to be told no appointments, and then had three letters saying
the above garbage!
I do think any new drug is scary and ,y GP said that he would be mkrecthanthe worried about a patient if then said ... Uh ok ... And took a biologic without researching and also feeling anxious about it. I hope your blood results are showing good results from Simponi. How long since commenced?
Also no one as got back to me as yet re my chest xray and last blood tests a month ago. S,sometimes when then gave been going well k leave my booklet withvthe GP surgery head re etjinjst tk get the practice to record all details and she alerts me if needs be. My GP also phones if iron has been a bit low but I need to check xray ok too. Rheumatology tried when I phoned but couldn't get on the computer system.
White bunny devoured! I love how they are such thick thick choc! Dark bunny sitting there looking at me!! How was the espresso Choc?
I am very glad the med for the complexion is doing it's stuff! I was watching a BBC programme on young skins and acne. Some poor guy went for some laser greatments as eel as meds as he was covered on his face and back. It took three months jt kt was amazing how great it was for him after all this treatment.
Well I am going to find a wheat bag to micro and some choc and a cuppa. My knees are rigid after being twisted about for that scan.
Love Julie xxx
I am very sure your interviewers didn't notice your complexion and it wouldn't make difference even if they had. What's a few blemishes when you are a pretty girl! ;-). I do hope sooo to see good news from you but keep on with the other applications too.
MTX gets blamed for a lot but then it can make hair thin and tums go
off. I think our often strange diets and other complex pharmacology all add to it .... And stress!!!! We got lots of that.
My husband is off till Thursday so I will do my letter tomorrow. Ight although I have it already draftees n my head! I know my Rheumy will take note but it is just getting it under her nose through the admin/system.
Sadly communication is not always great in large places. You seem to have found that out with the JC! strange ... Sounds very odd
indeed.
I will let them know exactly how it is ... Unacceptable is a word i shall use
Ha! Yes, I thought it was a bit strange getting a bone scan on your ‘nips’ !! I usually read these blogs in the mornings so it’s always a great bit of brain training to figure out what’s what When I use the touch screen on my phone it looks about the same, I really want to get a lovely old-fashioned mobile phone with actual buttons and not some silly touchscreen, it’s driving me mad!!! And now I’ve switched my keyboard to the Swiss German layout for my applications (getting too frustrated having to hunt for the ö, ä and ü otherwise!!) but all the stuff like exclamation marks and other symbols are in completely different places so I have to sit with a print out of the layout next to me to figure out what’s where...argh!!
Oh yes, farcical undressing sounds familiar. Did you notice that they don’t make normal jeans anymore, just skinny ones? Well, imagine the fun when I tried to force my massive swollen RA ankles through the bloody skinny jeans… at least my rheumy and nurses always had a laugh about it! I then began wearing dresses to my appointments lol much less of a nuisance!
My bloods have been really good so far with regards to liver function and such. But I’m anaemic and have something wrong with the white blood count (I think it’s called leukopenia). It’ll be good to see the results from the test tomorrow as it’ll be the first time I’ve had one since sterting isoretinoin on top on Leflunomide, Simponi and Prednisolone. I started Simponi on 14th September last year! I’ll forever remember that date lol.
Have you ever read Franz Kafka? His novels (like “The Trial” and “The Castle”) tend to revolve around some administrative entity that is completely inaccessible except at the very lowest levels and it’s impossible to get through to anyone in authority or figure out what the reasoning behind its actions are...in ‘The Trial’ for instance the court doesn’t inform the protagonist what he is being charged with (except that he is facing the death penalty), when his court appointments are and he is faced with an anonymous, hostile and completely impenetrable bureaucracy. I always keep thinking about Kafka when dealing with hospital administration They even have a word for it: “kafka-esque”. And I refer to any kind of administrative entity as ‘The Castle’ so I’ll say I’ll have an appointment at ‘the castle’ or will have to ‘phone the castle’. Lol. It amuses me, it’s the little things, eh ?
I do hope you give these people hell for being utterly useless when it comes to managing your symptoms until anti-tnf day. I think you’re right, I think they imagine their job is ‘done’ now that you are on the biologics track..so silly, the whole reason you’re about to go on anti-tnf treatment is that your symptoms are not being adequately controlled through conventional DMARDs..so you need more attention, not less. I really do despair sometimes!!! People can be so slow.
No news from the job people yet, but it’s only the 2nd day after Easter..I need to be patient..I’ll give them until Friday and then I’ll phone them to ask if there is any progress. Sigh. I just need a proper job so badly.
My espresso choc was lovely Need to get some 90% Lindt choc again today, I’m running low. And I need to up the protein, had a lovely salad yesterday for lunch with egg and cheese and broccoli and tomatoes. Was nice but as always it was a miniscule portion, I just feel so full I hate this!!!! It could be because I eat a lot of high fibre food? Or maybe I drink too much coffee? That suppresses appetite I think. I’m a complete caffeine addict though I am quite sensitive to it, get really wired after about 2-3 cups but usually can’t resist a 4th one. It’s a comfort thing
Let us all know how you get on and good luck to you
I said I had had an osteo scan on my "nips" ..... LOL!! How silly but hilarious! I have made ,myself laugh a lot which isn't a bad thing! I simply couldn't see anything but only one line of what I was typing! Then sticking and adding on bits I had thought I had deleted. It has gone bonkers today on the iPad. This is one of my best typos ... Saying the scan was on my nips! (@) (@)
Adding in my sausage fingers my typing today is abysmal! They will def want that RSA advanced teachers diploma back!!!! The iPad is so easy to make mistakes on! My excuse. When fingers go down my typing improves.
Thanks for this Julie I thought my eyesight was going lol hillarious! gave me my first giggle of the day
Sending gentle hugs. Love Janet xxxx
neon you now get the blog/ typing crown from tilda!!, steroids hhm yes i have been left too long waiting for meds many times from by my trust this has now given me clinICAL BP , which may or not be permanent x
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They told me they'd get back to me 'after Easter' I suppose in theory that could mean until next year 
!! I usually read these blogs in the mornings so it’s always a great bit of brain training to figure out what’s what 
Waiting for Enbrel to kick in
Bad couple of weeks
Calling all Biologic Boffins! A question about Rituximab being a chimeric biologic. 
A bit of everything
Bit of good news for a change! 👍😀
