Just not coping with the whole thing.

crabby85

I still cant get my head around it. I know i need to get on with it, to get my chin up and get on with it but i just cant, i feel so weak an defeated.

I have an appointment coming up to discuss my treatment plan; the steroids ive been taking have taken the edge of the hand and wrist pain but its still there & the side effects from all these new medications are making me feel hopeless too. The next step is a dmard. This may sound very petty to alot of you but this worries me alot because i have discovered when on these type of drugs you need monitoring with blood tests. For some this may be no problem but for me it is causing very high anxiety and stress. Ive been through so many blood tests these last months and it has been hellish for me. I have a severe phobia and im thinking how can i have a lifetime of regular blood tests? is there any way to get out of this? is there any in particular you dont need blood testing with?

I just cant get used to this

fortuna

Hello,
Having been a type 1 Diabetic for over 30 years and injecting several times a day blood tests are just another nuisance to me. Not that that will help you I know.
But somehow you have to conquer your fear or the pain will take you over. I have only been diagnosed for 3 months but with steroids and MTX
I am a new person. No pain, no swelling in hands or feet. Steroids finished now and only one slightly swollen finger and still no pain.
Can someone go with you for your blood test and talk to you while it is being done? Do you think hypnotherapy might work?
Try and think positively about being pain free.
Sorry I can't think of what else might help. I hope someone else will come up with some words of wisdom,
Fortuna

toady

So sorry you are struggling with your blood tests etc and of course it isn't petty if they make you anxious - phobias are horrible, I don't have one for needles (which is very lucky as I have to self-inject too) but I certainly have others and everyone that does understands how you feel. I was extremely reluctant about taking dmard's for all sorts of reasons and felt very similar in that I just could not see a way forward. I now have to take methotrexate for which I have monthly blood tests which I understand could be decreased to once every 2 months in time.

The only dmard not requiring that sort of monitoring I can think of is hydroxychloroquine (plaquenil) which is an anti-malarial but loosely falls into the dmard category - but that's just off the top of my head. If you have been needing steroids it sounds as if that might not be strong enough for you as it is used for milder cases, although that depends on your symptoms. What is your current inflammation level, I know you are having joint problems but not sure if that is pain or also swelling etc and if you have high inflammatory markers. Also what are the other medications you are taking already, you mentioned diclofenac in a previous post sorry if I haven't picked up on what else.

Sorry I can't be more help but I do understand where you are coming from and have definitely had times when I feel I can't 'get on with it' and have hit a brick wall. Best of luck with your next appointment, let us know when it is & how you get on. Sending support, toady. xx

crabby85

Hi Fortuna.

Were needles ever a problem for you in the beginning? How often do you get your blood tested on the MTX?

I've always had someone with me for the blood tests i've had so far in the diagnosing stage and i'm still pretty pathetic in there tbh!!

Hypnotherapy may be an option but i cant see it working! im so negative!

crabby85

Toady, i am also taking omeprazole and diclofenac along with the prednisolone. Since being on all these new meds i just feel depressed, tired, sluggish, swollen, terrible heartburn and the joint pain is still there on top.

I have just had a load of bloods done ready for my next appointment so i guess i will find out my levels then. My last 2 sets showed high inflammatory markers. I know the rheumatologist said he will discuss what new medication he will put me on at this next appointment and the steroids were just to 'keep me comfortable' until then.

I am sero-negative which he said is a milder form, so maybe that will make a difference to the medication he decides on.

fortuna

Hi Crabby,
No, needles were never a problem for me. I remember the first few times I had to inject myself it was painful until I got the hang of it. I have a blood test every 2 weeks but that will change to monthly in a couple of weeks. And then hopefully to 2 monthly.
Try and think how good it would be to only have them every 2 months. And if the drugs are working as well as mine are at the moment you will be feeling so much brighter and healthier!
Hope I'm not tempting providence with the first part of the last sentence.
Fortuna x
PS I have had no side effects to speak of apart from feeling very tired the day after my MTX.
Your last message just flagged as I was adding mine. I think hearing the diagnosis is a main cause of the depression, sluggishness and tiredness it is quite a shock to the system. I am sure it is time we should be in bed!
Good Night

stickywicket

You will learn to cope but you're, no doubt, still a bit shocked from all that's been happening. You have some good advice there from fortuna and toady. I think you should try to reconcile yourself to the idea of regular blood tests or needles in one form or another. Tell your rheumatologist how you feel and do think about hypnotherapy. Blood tests for meth are important and must be regular though, once all is going well, can usually be reduced to every two months. Hydroxy is probably not an option on its own: only in conjunction with meth or another DMARD. You will get there. Just be patient with yourself.

dreamdaisy

In a peculiar way I have been very fortunate with my life - I've been on drugs for the majority of it so had to learn very early just to get on with things if I wanted to feel better. I wasn't keen on the self-injecting but then reasoned that others do it so why shouldn't I? In the long run it has saved me an awful lot of time with not having to hang around the hospital waiting for someone to do what I can do for myself. I had fortnightly blood tests for years, now I am on two-monthly (note to self. go and get some done!) and even now I don't look, I distract myself with pleasant thoughts or chatting to the phlebo and it's done and dusted in no time.

You are in the very early days of this, and no doubt it has all come as a helluva shock but, on the plus side, you are being seen by a rheumatologist, he is starting to put things in place for you and, from my perspective, this should lead to a better outcome. Good luck. DD

dibdab

I guess many of us struggle to a degree early on as we struggle to get our heads around not just the disease we have, but what that might mean to our future. I'd encourage you to try not to get despondent-there are all kinds of treatment, and of course we need the blood done because they are powerful drugs. For me the needles aren't such a big deal, but my OH was needle phobic to the point of refusing pain relief in hospital when he was in agony, but he had to conquer that fear after a heart attack meant daily injections. I wont pretend he enjoys them now, but he has got used to them and just looks the other way.

Keep talking, ask the questions that are in your head, and make the health professionals aware of your concerns- you wont be the first or the last to express those fears.

Take care

Deb xx

Colin1

Hello Crabby, Best way out of this and I speak from experience , is jump right in with both feet, starting with coming to terms with what you have. Next find a hobby or something you enjoy doing, try socialising, join a group or club but don't just sit there letting it win. I know when you ill all these things seem so far away. The mind is a minefield when it comes to illness all the things that go through it. depression is a dark place stay away from it. the only person who can help you is yourself get your mind sorted start coping and your on the way to dealing with the whole thing. bloods, hospitals, appointments, the nurse, the doctor, the consultant all scary stuff crabby but who said it will be for ever. once you are in a stable situation your bloods and check ups will get less. I know its hard getting about and doing things but you have to push yourself. I bought myself a green house I now think more about the green house more than the arthritis and on the days I cant get to it I read about plants and plan the layout for this year garden, I grow them and the wife plants them out. you will get there but it all takes time. if the pain gets really bad and you cant cope you can ask for a depot medrone injection its a great help relieves the pain for weeks. I do have one warning for you im sorry to tell you this its the prednisolone I don't know what your dose is mine was 30mg a day for 8 years. I am now steroid dependant my body can not survive without it my dose now is 15mg. believe you me they work and what the doctors and you want is to get you out or reduce your pain and the prd does that but its not a long term medication, you talk to your rheumy nurse or consultant about it. the other thing is to make a list of all the things your worried about let them know how you feel. take care I used to think if one more person tell me to keep my chin up ill kill them so ill not say that.
Colin

bubbadog

Hello Crabby, I can relate to the constent blood tests. I have a serious needle phobia and to top it all off my veins are hard to get so a lot of the time I have to get stabbed by the Vampires (blood nurses) a few times. I'm on Hydroxychloroquine and I have to have a blood test every month and go and have my eyes tested every year. It's a pain in the bottom but to help keep my pain and symptoms at bay I go through it.

Cariad71

Hi crabby,

I'm sorry I'm struggling to keep up with who's who on the forum and what their diagnosis is etc, but I can see you're the same age as me.

I'm sorry to hear you're struggling. I don't have a needle phobia but I absolutely hated blood tests before I started on DMARDS. I still don't enjoy them, but find that looking the other way and chatting while they're being done helps. They also get easier the more you have them as you just start accepting that you have to have them done to feel better and stay on the drugs - and it really is worth it. Im sure they can use a local anaesthetic cream for people who have needle phobias, which means you won't even feel it going in. It's worth asking and being open with them ASAP about your phobia.

What I can tell you is that DMARDS can change your life and almost make it as though you don't have arthritis, I started first sulfasalazine then went on to methotrexate and was well controlled on that with NSAIDs as required and only very occasional steroid depot injections. The oral steroids you're on may help but ultimately you need a DMARD ASAP to help stop the progression and joint damage. I know its scary but I really did start to forget I had anything wrong with me when I was we'll controlled on mtx.

The frequency of bloods varies depending on which drug so discuss this with your rheum but they do get less frequent once they know you're tolerating them.

I wish you well xxx