In a few days time it will be five weeks since I was last seen at the Rheumatology clinic and fit the criteria to be put onto a Biologic which they told me was going to be Enbrel.
I had all the screens and relative tests and then the wait has begun.
My lovely lady GP who had been through the whole RA diagnosis with me had moved on and left my practice so as I needed a sickness certificate for work I made an appointment with another GP.
The trouble was the clinician letter from the hospital hadn't come through so I phoned the RA help line and when they called me back it was obvious that pretty much nothing had been done since my hosp appointment.
The nurse said, 'oh yes the letter is here but it hasn't made it as far as the post yet' She said she would fax the letter to my surgery but it was a Friday, my appointment was on the Monday and the damn letter didn't make it to the surgery until Tuesday!
Needless to say I had to go to a new GP and verbally explain what was happening to me, I was met with disinterest and lack of knowledge about blood tests and their frequency when first starting on Biologics.
There was a definite sense of the GP absolving responsibility in favour of the hospital but as we all know the hospital contact is months and months apart.
Ultimately what I'm saying is that I'm in absolute limbo, I almost feel unmedicated at all as am just on Hydroxychloroquine while waiting for the Enbrel.
I have managed to stop Prednisalone in the last two weeks but am suffering badly with pain at the base of my skull on both sides.
If I phone the RA nurses they will just put me back on steroids and I refuse to damage my body over and over again with these insidious drugs just because the proper treatment takes so blinking long to arrive.
I think I'm feeling so stressed because of the seemingly endless wait for the phonecall saying the drugs will be delivered.
I don't know what to expect and friends and family never stop asking, I think they can't seem to grasp that this is something you can't just turn up at Lloyds Pharmacy for!
Thank you for listening, it's so helpful to verbalise what I'm feeling.
I appreciate this site and everyone here so much.
Mandx
Written by
Mandalou
To view profiles and participate in discussions please or .
So sorry you are having to go through this barbaric ( in my opinion) process to get the drugs that will hopefully be the relief for your pain. I was off mthx for 5 weeks to get my disease active enough for the first DAS score but couldn't cope with the pain to get to the second score-- so now back on a reduced dose of mthx, and had a steroid injection on friday. Good luck and hope you get sorted soon. Your hands look like mine at the minute 😯x
I know how you feel, I have been on all other meds which did not work for me. Was passed to go on biologics.. Waited for meds to be delivered, explained I was on holiday till 22 Oct, finally got my first injection on 21 Nov after being sent the wrong meds should have pen but received syringe, I have now had three injection, hoping they kick in soon.
Sorry to hear that you are having problems. Having recently started the Humeria Biologic ,I can sympathise with you as the pain from the r.a is so terrible ,and the agony of the meds taking a long time to arrive is equally very stressful.
I was the same as you,and my family were the same ,keep asking!
What you are waiting for is the Healthcare at home letter,then soon after that they will contact you ,or if you are like me ,I rang them,they will deliver your meds.
I have been on my Biologic for six weeks now , and I am feeling a lot better.
Once you get used to injecting yourself you will be fine. I have injected myself today.After I done the injection I thought to myself ,I don't like doing it because it hurts (stings) but I must to be able to get some sort of relief.
I have just heard that I have been offered a new job,only two days a week.I wouldn't have even contemplated it if I hadn't been on Humeria.
Your hand looks swollen and sore. Anyone who sees this should get a move on. Is there a choice of Gps at this practice? We have a big surgery with several doctors and they do vary a lot.
It was so kind of you to write to me and I can't tell you how much it means to get sympathy from the very people who really understand.
I agree regards GP's and I have made another appointment this time with a lady doctor to see if I get a little more understanding. Not that I think gender indicates someone's knowledge about RA but I shall go through the whole practice if I have to to find someone who 'gets it'
I'm just returning what others have offered me! We have about five GPs in the local practice and they do vary a lot. I certainly take note of the ones who listen and have the imagination to ask caring questions. Often these are the ones who are booked up but I've found a way of booking on the same day. And have often used telephone consultations too. Let us know how you get on.
I agree with Jacki, it is barbaric! Before going to complain, I would try pushing the nurse again to get things moving - if you are very clear that all you're asking is that the process is as smooth & fast as possible, and you don't want to go back on steroids in the meantime then you can't be forced to take them. Very polite pestering might work, as then becomes easier to get it sorted than respond to you phoning every day/two days to ask about progress. You need to keep the nurse on your side so do emphasise how miserable you are.
GPs do often seem to be a bit at a loss with biologics, probably have little experience of them, and are dismissive to cover up their lack of knowledge. But wouldn't it be nice if they could just say that it's new to them too, and admit ignorance?
Hang in there, and don't forget things like ice packs while you're waiting. Some people find green mussel gel very soothing on sore hands.
Thank you for the Green mussel gel tip. I am going to source some ASAP.
I agree wholeheartedly about GP's knowledge re Biologics and in my limited experience since diagnosis have really sensed a touch of professional disrespect from the hospital and vice versa.
God yes, it really would be refreshing to hear a GP say 'let's learn about this together so you get the best most appropriate treatment'
One can but dream.
Grateful thanks for all your advice.
Mx
You poor thing - I'm with the barbaric brigade on this awful NHS protocol you are experiencing. The reason your family and friends can't grasp how this works is because no one can understand the awful catch 22 we are placed in by it - it is just incomprehensible that this happens in a "civilised" society. Your hand looks so painful - I remember this pain and swelling well although mine has gone for the time being.
I have been waiting for 13 weeks to hear back from my new rheumy and am also off steroids and unmedicated. However, unlike you, two years of MTX and Hydroxy chased off RA and all I am left with is fatigue, neuro issues, stiffness and an achy bladder and kidneys with traces of blood in pee- not an infection. I am newly medicated for hypertension.
The GP won't refer me to pain clinic until this letter arrives and the rheumy nurse helpline don't have anything to go by yet since my RA diagnosis came from a different clinician in another Scottish health board. This is nothing on what you are going through but I do at least know how hard it is just waiting for a letter. Txx
You're caught in the middle & the one suffering with the crazily long time between qualifying for biologics & them actually starting aren't you Mand. Jacki's right, it's barbaric, we wouldn't let our animals suffer like this. I've seen it time & again & it seems inhuman to me.
It's such a pity your GP has moved on & I'm sorry the one you saw hasn't the first idea how things as for you. Is there another GP you could see? I'm not au fait with the options for you just now but wouldn't a steroid injection tide you over until you start your new treatment, just to bringing that inflammation down would make you comfortable at least? I'd keep on at your Rheumy team, hopefully they'll get the message.
Sorry, not much help but I really hope now your team are aware how things are that things start moving at a pace now. x
I'm afraid I tried the Depomedrol injection to help me while Ive been between Meds but all it gave me was a sore arse and a spike in blood sugar.
They told me because it didn't work for me there is no point trying again.
Oral steroids work instantly however but I have made a pact with myself to only use them in extreme emergencies.
I think it's the steroid induced Diabetes that has made me so cautious of using Prednisalone. The hospital push it on me but if I can ride out the flare and have a good result on Biologics it HAS to be better at least that's what I'm telling myself.
Heard today that delivery is Tuesday next week so I could dance ( well not really but if I could I would, ha ha ha)
Poor you. Your hand looks very painful. I can empathise. I was on Enbrel but am now waiting for the Rituximab infusions to kick in. I'm also on methotrexate and 5mg Prednisilone. I don't know how slowly you came off the steroid. Rebound pain and inflammation can occur from withdrawal alone, and certainly does in my case.
i do find Green Lipped Mussel gel soothing. It's not a cure ( if only!) it does bring some temporary relief. Pernaton is the one to go for. I have a huge tub of the stuff.
We're Pernaton fans too, after Jo recommended it we tried it for my h's tendonitis after a partially dislocated shoulder he suffered following an op. I've used it too & it certainly takes the edge off.
The thought of mussels with green lips amuses me, but I love the stuff. It isn't a cure, so don't let it raise your hopes too high. But I do find it soothing and I think that just doing something for oneself is therapeutic. Unfortunately my cat doesn't like the smell . She wrinkles her nose and stalks off.
I think the Enbrel worked fairly well, but I got lung infections with such frequency that I had to stop the injections, and the Methotrexate. I'm in a flare at the moment; (CRP 98, ESR 54). The markers have been higher than that, but I was hoping for better results from the Rituximab. Still, it's early days. My diagnosis was polymyalgia-onset RA, so I think the reduction in the steroid could be the problem. The only treatment for PMR is steroid.
I really feel for you.its all wait wait wait. Such a crazy system. And when they assess you they press certain points n Look at your hands..not your feet..as if they're not part of your body.Then you have to say on a scale of 1-10 what pain you feel.you wouldn't be sat in that chair if you weren't struggling..strewth.
Then you stay calm and they decide in their power you will have the drug then you still have to wait til the last drug is 8 wks out of your system so it doesn't interact. Meanwhile your still waiting in pain
I know you don't like the prednisolone but wouldn't it of been best to stay on it til the Enbrel kicked in.I am still on it 4 years down the line n tried three biologics. I hope yours works n very quick for you
My God 4 years on steroids? Are you having any side effects from them? Are your bones ok?
I guess it's that fine line of finding a treatment that helps but also being able to live with the inflammation and pain.
What happens now that you have tried three Biologics?
I agree with you about the pain thing, at least at my last appointment the Rheumatologists squeezed my feet, but I know what you mean about the feet being ignored a lot of the time.
Aah, yes Amytriptiline, I have been on that and it did help with sleep. It's used in low doses for our kind of stuff isn't it ? as averse to its anti depressant properties.
I'm on Calcium too because of the huge doses of rescue steroids when I had my incapacitating polyarthritic explosion.
Sticky blood sounds rather grim, I'm going to look it up.
Sticky blood.well majority people have had blood clots strokes,miscarriages etc but I haven't .lots of spasm n jerking when walk.I was ok til I had biologic Rituximab.so warfarin for life now.
I know how you feel. When I went for a check up in August, I wasn't in too much discomfort. Aches in my knees and a couple fingers were hurting but nothing I couldn't handle. So he said to come back in three months and we'll see about biologics. A couple weeks after that, more fingers swelled up, my knees got worse and I could barely walk because my feet were swollen and around my toe bone. My back has also gotten worse. And when I was expecting an appointment early November, I then find out it wasn't til end of. So I go to that, fully pissed off at the long wait bc when I tried to have the appointment pushed forward, it couldn't be done and I was in a lot of pain.i had a blood test before the appointment and when at the clinic I was then not seen due to an issue that my nurse couldn't get in to work. Fair enough. That couldn't be helped. But... Then when they rescheduled me for 10 days later, that got changed. So I'm seeing them on Friday. Ugh. No pain killer has done anything and my bloods showed my inflammatory markers have climbed to 40 odd and even my doctor rang up concerned about my liver. So yeah, I can truly sympathise with you. Sometimes you feel like doing things your self in terms of medication bc god knows the docs take forever to get their shit together. Then again, we'd be screwed without them. So It's a waiting game. Sigh. Sorry to go on. I think I needed a rant too. Haha. I do hope you get your issue sorted.
The consultant said he'll start the procedure to get me onto Biologic treatment but it'll take a few months apparently. Sigh. And he's given me different anti inflammatories because I'd been on diclofenac as it's the only other thing that works. It was nice to have confirmation about stuff though and get things moving in the right direction. I think I see the nurse to discuss options of biologics but don't know when. Hopefully soon.
I think the nurse is next available appointment and that was to discuss what Biologic to take. He said really in terms of benefits, they're all much the same. But because they have to apply for it it'll take a while. Also turns out the anti inflammatory pills he prescribed me today are the same I've had before that didn't really do anything but I can't find the old box to see what dosage it was. Oh well. I'll give them a go and see.
Hi Mand
Your treatment is dispicable. Your GP's office should be supporting you and advocating for you so that you are on the most appropriate treatment possible as soon as possible. The pain and suffering are inexcusable.
I have used an injectable, slow acting steroid called Depo Medrol while trying all the different drugs. It is 120mg intramuscular and keeps the inflammation controlled so I can function for up to three months. The good thing is there is no tapering off like the oral prednisone but of course there are potential side effects but then there are potentially serious side effects to all the drugs that are offered for RA.
Hope you can keep it together and get some good support medically soon. You deserve this and shouldn't have to suffer unnecessarily.
Thank you very much for replying to my woeful tale!
I have heard from Health at Home now and I get delivery on Tuesday!
I so appreciate your thoughtful kindness and advice.
Unfortunately the steroid injections don't work for me but I'm ok today as the dreadful aching at the base of my skull has eased and my hands are less swollen. Must be psychological after getting the delivery phonecall!
It worked well for me, except that I got lung infections too frequently. Then I had to stop both Enbrel and Methotrexate. Obviously, that wasn't very satisfactory. I hope they are right in saying that one is less vulnerable to infections on Rituximab. I had one, between the first and second infusions, which delayed the second. I'm delighted Enbrel is so life-changing for you. J
I am not talking Methotrexate, I wasn't able to take it to sick I had a chest infection at the beginning of the year. I take the odd kidney infection but keep mostly well.
Sounds as if you been caught between casual indifference from the hospital and wilful blindness at your GP.
I'm sorry to hear your plight - I'd go with the suggested firm but polite pushing of the nurse again. All you're asking is that the process is as smooth & fast as possible, as helixhelix suggested.
I find that having a clear set of decision points for them to make helps.
1 - I don't want to have more steroids as they are affecting me badly
2 - I need to have the drugs I'm prescribed
3 - can you get that letter out please?
4 - or, can you prompt the Dr to complete X form
5 - when can expect to receive the letter?
6 - can I call you if it doesn't arrive by [date]?
It's the sort of process they have to do anyway but you're effectively walking that person through the steps they need to take, which makes it simpler for them to do when they need to.
That's the sort of process I have in my head, but it comes out more conversational than that. I'm lucky in that I don't need to follow that route with my rheumy team as they do it anyway.
I'm very pleased that it sounds like you have a great Rheumy team, you are extremely lucky but I also believe that clear communication rather than luck can bring dividends so good for you!
So appreciate the benefit of your experience and thank you for responding.
The drug is coming next week so my long wait is coming to an end.
The nurse wanted me to do thighs and tummy ( not at the same time), but I always did it in the tummy. Generous though my thighs are, I could get hold of a wadge in my tummy more easily. One thing the nurse failed to tell me until her second or third visit was that it's important to release the squidged bit ( I'm sure there's a more clinical term!) as soon as you've inserted the needle. Ah, I've just thought; you might be having the pen. I've never used those.
Good luck. It is exciting and I hope it is life-changing for you. Jo
Don't want to put a downer on your excitement but when Enbrel arrived for me I then had to have a nurse come out to direct me step by step of first injection before being allowed to proceed myself.She was superb and came periodically to check progress of it.I injected in thighs alternately. that way I could just hold n press top button at same time.They give you these pen injections when you can't even use your hands but it became easier and its only a shock pain for a second or two.really hope you get relief before xmas
Yeah, of course getting the dratted stuff delivered is only 1step but I understand the process, blimey with my track record I'm not even holding out much hope that Enbrel will help but at least there could be a 50% chance according to some of the literature I have read.
I'm very pleased just because it's a step forwards and I always had that awful feeling that someone would suddenly decide I wasn't eligible after all.
Thank you for the advice regards the pen, I'm hoping it's a pen they give you these days. I'm a tough old bird when it comes to pain so hopefully the sting will only last a second or two as you say.
I will need everyones experience in the next few weeks.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Waiting but not patiently
Waiting for Enbrel to kick in
Ultra sound scan long wait- don't know where to turn next?
