Help please...... pain relief.

Jyoti70

I have been diagnosed with PsA for a number of years and have been on several biological drugs ( enbrel humira etc) currently on Consentyx. Originally I was given longtec and shorter which helped. During the pandemic my entire body felt it was seizing up and my GP ( mostly over the phone) increased my longtec to 2 x 40mg a day. I continued to become worse I finally paid to see a consultant privately and we realised it was a fibromyalgia flare ( new to me)

Luckily I have managed to keep these flares to a minimum through sheer mental positivity, it works for me.

However the doctor started the reduction in both long and shortec This was fine for a while but now I am being bought down completely. My new GP .... I had to move and buy a much smaller bungalow to cope) just keeps saying she will not prescribe them. The consultant from the pain clinic wrote and told her to keep my dose as it is now....25 mg long. 10 short.

I am really struggling on this amount. The arthritis affects my hands shoulders feet and hips. I have already lost my home, lost any form of social life, struggling with basics like getting up and washed. The isolation has been devastating, I am 62 yrs. I recently put myself forward to do some volunteering in my background field ( legal) I am desperate for this because I see no point in a life when just getting dressed is all I can do.

My GP is now going to take this pain relief away...... I have never met her ( new address) just over the phone. I cannot believe they would rather leave me housebound than give this pain relief. Not once has she asked how I'm coping and is not interested, she refuses to take note of what the pain consultant says and told me if I didn't like it go somewhere else. I know all about different creams lotions relaxing techniques etc etc but the reality is my joints are destroyed and I need help.

I don't know what to do...... I have reached my limit and sense I am about to be left to literally rot in my house. My family live abroad and all my care is down to myself.

Poppyjane

Welcome @Jyoti70 to the online community

You have had PsA for a number of years and have been prescribed a range of biologics and at present are taking consentyx or secukinumab which your new GP is reluctant to continue. Your phone consultations with her have left you feeling unsupported.

This is at a time when you have had to make some major life changes to accommodate your condition. You are concerned that you are increasingly isolated and your positivity which has helped you through tough times before is struggling to support you at the moment.

We are here to support you online and if you would talk like to someone our Helpline 0800 5200 520 is open

9.00 a.m - 6.00 p.m. Monday - Friday.

Meanwhile I attach some links which I hope you will find helpful

https://www.versusarthritis.org/about-arthritis/treatments/drugs/secukinumab/

www.psoriasis.org

There are some interesting conversations on psoriasis by our members who have shared their personal experiences. If you would like to access those, go to the magnifying glass symbol top right and type psoriasis into the search line .

We hope now that you have made contact with us that you will feel less isolated and more able to pursue the voluntary opportunity which will make use of your legal skills.

Best wishes

Poppyjane

janey4

Hi @Jyoti70. Sounds like you facing many challenges at the moment and so sorry to hear that you are feeling so unsupported and struggling on a daily basis, but glad to hear that sheer mental positivity is something which helps you. Being in pain causes emotional challenges as well as physical. It may be helpful to speak to your local council and ask for an Occupational Therapist referral through Adult Social care. This service is for everyone and an Occupational Therapist will look at options they may be able to provide to support you with everyday tasks etc. You may also perhaps want to look to see if there any local friendship groups or befriending through Age UK. Your local Healthwatch may be able to help you get the help you need through the GP or perhaps having a chat with the GP practice manager about getting a second opinion. Sometimes the local pharmacist can be helpful in advising about medications and may guide you on how to get the help you need.

https://www.healthwatch.co.uk/

Best wishes

Janey4