At's all becoming too much again!

Claire38

Hi I'm fairly new to the forum, and I'm so sorry to write such a miserable first post. Been trying so hard to keep positive and carry on, but I've reached rock bottom again. Sooo fed up with it all, and think I might soon have to make the hardest decision of my life!

I've been off MTX, now since last summer, and off all NSAIDS from November. I can't try and get funding for anti-TNF's apparently until I've tried at least two DMARD's according to NICE guidelines. Leflunomide, is what they want me to try next, with or without a low dose MTX as I can't tolerate a high dose as it gave me nasty side effects. The aim of stopping treatment temporarily being to try for a family. Been trying since November and still no luck. I know 6 months really isn't that long to be trying considering my age (I'm 38) etc, but I feel I'm running out of time! Every month is harder, and more disappointing.

My pain is now awful!! My back, especially my upper back is worse than ever, as are my chest/ribs, hips (especially the right one), right knee (which is swollen to twice the size of the other one), and even the plantar fasciitis is pretty bad again. All my joints are stiff and painful. Really scared the psoriasis related enthesopathy and spondylitis (they won't call it PsA as at the last appointment I didn't quite reach criteria!) is progressing without treatment, and I'm really not sure how much longer I can bare this amount of pain. Still managing to work, but it's hard. Sheer determination I think is what's allowing me to keep working in the role that I have, and simply because I love the job so much, but I'm not sure how much longer I can keep doing this.

I'm still taking Tramadol and having intermittent IM steroid but not sure this is good long term. Also the odd Zopiclone when I'm so desperate to sleep that I'm loosing the plot. Pain is keeping me awake so much at night at the moment.

I see my rheumatologist again on 9th May. I was so hoping to be pregnant by this time so as not to have to make any decisions about restarting treatment.

I really really don't know what to do.

I've not had any scans or x-rays for some time (18 months or so), should I push for some more when I see the rheumatologist? Perhaps they could see some thing on the scans now to allow me to have a definite PsA diagnosis? Should I go back on treatment, and give up on having children? I'm seeing my GP on Thursday, and will probably ask him if they can x-ray my knee as it is so swollen, and also ask for advice about fertility etc.

So many questions I have!! I can't imagine a life without a child to love and care for, but I also don't know if I can cope with this amount of pain much longer. What if the "PsA" is progressing? Would I be able to manage to look after a child any way?

Life is so cruel. I wish some one could just make the decisions for me.

Really tired, very very sore and very very very fed up!

barbara12

Oh Lovey I really do feel for you, and please dont apologise for moaning , you have every right to.
I think you need to ring your Rheumy at the very least,I do think you badly need something to help you sleep, this will help you in lots of ways...when we are tried the pain seems so much worse.
I have OA..so I cant advice on your meds but I do take amitryptaline ...it helps me get a good nights sleep....we do have an helpline num at the top of the forum, please give them a ring..they really are very good.
I do wish you well with becoming a mum, we have one lady that has just had her twins...and I think there are a couple more just coming off there meds to try, so dont you give up...((((())))xx I do wish I could help more but you know we are always here.x

constable

No, don't give up on trying. I was a late mum. First child was when I hit 36 and second I was 38, almost 39. It just goes to show doesn't it.

I cant advise on meds either as I have oa. But, just wanted to say not to give up on having a family.

frogmorton

Oh Claire

I am so sorry you are suffering and that the pressure feels like it's on to conceive for two reasons.

One your pain and two your age. It really is awful when you are balancing your own health needs against what is obvioulsy a real physical need to have a baby

I have been through this (sort of) with my friend who's husband died of cancer halfway through IVF. I know all too well how lucky I myself have been, but felt her pain at the thought of not having a baby of her own as i became her 'partner' for the treatment

I expect you have heard this before, but 38 really isn't so young - these days women are having babies well into their 40's.

I wish I had the answer, but want you to know we do understand and rooting for you

Love and ((()))

Toni xxx

DebbieT

Hi Claire,

I'm really sorry to read about your dillema

I have OA, Plaque Psoriasis, Fibromyalgia & PsA. My Rheumy has always told me to except any treatment that can help slow the progression of the disease & the resulting damage it causes. However, in your circumstances I think you really ought to consider your need for a child, They are irreplaceable & an amazing gift!!

I honestly believe this is a decision that needs to be discussed thoroughly with your partner & I'd personally include your GP or a counsellor.

I'm now coming up on 43yrs old in May & have four grown children but since getting Fibromyalgia (fm) my mobility is practically nonexistent. It's a combination of the FM & PsA. I have a 3 year old Grandson & our 2nd Grandchild is on it's way & it's really really hard. I feel like being young grandparents should be a great thing for them & us, in truth it is, but I just wish I could do things with him I must admit that I don't think Mason could be more loved & he worships his Grandad, he is also disabled, but I suppose the things we do with him are different & our daughter insists he's not missing out on anything!! I hope he isn't coz it does play on my mind.

I suppose wot I'm trying to say is that I think it will be hard work but babies & toddlers are hard work.Lol If it's something you need to do then go for it huni!! Uve got time to figure out how you could adapt how you'd do things to make it easier for you. Also you can go back on ure meds straight after the birth if you want or need too. I know Mums get put under a lot of pressure to breast feed & if you can, even if it's just for a few days, then great but please remember its YOUR body so never forget that!!!

I wish you all the very, very best with your choices. I can 100% say I wouldn't swap being healthy if it meant I didn't have my kids & Grandson!!
I dunno if I've just waffled on or if it's helped at all. Take care.x

lizzieuk1

Oh please don't give in to it you've got through the worst of it, I have ra and thankfully conceived my baby boy whilst in remission but we have just had a miscarriage trying for a second and my ra has been grim since having my boy 2 years ago so I know how u feel, but I'm damned if I will give up my rheumy mentioned leflunomide but I said no way I want a family stuff the ra! They said the biologics are next as I am 'not suitable for leflunomide' due to trying for a child - not sure if PsA is suitable for biologics but if u can't have anything else theory have to do something.
So in 2 years I've had 9 im steroids tried various dmards and still not much better so in answer to ur worry about the steroids don't ur only 6 months in so no reason they cant give u steroids until u conceive pester the rheumy otherwise they won't do anything, you can take sulphasalazine and hydroxychloroquinine whilst ttc so why not ask for those before leflu since they are both dmards if u get no better u then should qualify for biologics
Keep going u will get there! Xx

Claire38

Thank you all so much for your encouragement.

Just what I needed

Off to the GP on Thursday for a chat, and then rheumy appointment on 9th May, so will see what they have to say then. Until then I'll just keep on going, and try not to let this pain get the better of me.

Claire
xx

Claire38

lizzieuk1 wrote:

you can take sulphasalazine and hydroxychloroquinine whilst ttc so why not ask for those before leflu since they are both dmards if u get no better u then should qualify for biologics
Keep going u will get there! Xx

I've been trying to find out if sulphasalazine is safe to use while ttc. Some information I've found seems to say it is, while others are not convinced :?

I asked about sulphasalazine at my last appointment back in November when I told the rheumy I definitely wanted to try for a family. He said he didn't think it would help and only seemed interested in the leflu. Which I refused. Like you say at least if I tried the sulphasalizine this would count as the second DMARD and increase the chances of getting funding for anti-TNF's, and I could also still carry on ttc, if the sulpha is safe to use. I wish I'd have pushed more for the sulpha. Maybe this time, he will be more willing for me to try some thing other than the leflu as the pain and swelling is so much worse.

lizzieuk1

I think its a matter of weighing risk benefit as usual but my rheumy put me on it whilst TTC and said just stop as soon as u find out ur preggie as it turned out I stopped early as it made me depressed, def worth chatting about it with them though keep pushing theory should rule out leflu as ur trying for a family and its 2 years withdrawal which is rediculous just be determined and they'll miraculously give u other options!
Am seeing my rheumy on 7th so looks like we'll both have an interesting week since I am trying for no.2 but not stable at the moment which they're unhappy with but am damned if I will give up my family to this disease!! Chin up. Xx