Help Please

[LouLamb]

Hi everyone,

It has been a super long time since I have been around. Life was okay for a while and then it went wrong. It picked back up in the last few months but currently, I am at a low point.

I am being passed around from my local hospital to Guys in London. From Guys to my local hospital. And to my GP. I am struggling at the moment and honestly right now I want to give up. I want to give up on everything. I want to stop all my meds and just not do life anymore.

I am being told to restart and try methotrexate again. Which previously when I got up to 12.5mg on tablets and injections raised my ALT to over 200 and had to be stopped. They want me to take 10mg to try. I am on 5mg pred. I have been on steroids for over a year and a half now and due to that steroid usage I now have other problems with my blood work and inside me.

My GGT is currently 96 and has been over 90 for the last few months but whenever I try to enquire I am fobbed up and will not be given an appointment. My AST on Monday was 37 which is slightly raised. My Urine creatinine is over 30 which is over double what it was 2 months ago. No one will explain these bloods to me and no one will check me. All I see from researching is liver and kidney failure as possibilities. I never had any problems until I was on steroids for such a long time. I put on over 2 stone last year in the space of 2-3 months due to high-dose steroids.

I am at a complete and utter lost. I do not even know who I am anymore and honestly, I couldn't even tell you right now what the point in my life is.

A very sad and exhausted Lou

[StriatedCaracara]

Knowing where to go is probably the hardest thing but on this forum there is so much we can learn from each other.

Also having the energy, feeling positive and not feeling utterly lost can change from day to day.

I have been getting listening help from the Wren Project. Not so much to do, in my case, with the diagnosis, but day to day issues and struggles with meds, and with historic support available to patients being in state of flux - they understand this deeply so it really helped talking to them:

healthunlocked.com/lupusuk/...

[StriatedCaracara]

With no medical insurance and never having had private healthcare in the past I contacted the London Lupus Centre.

In an email I told them my situation and asked if any of their consultants might be able to help. They gave me the names of three of their consultants. I then phoned to discuss further.

I learnt online technologies were used, later I had a face to face appointment.

I had been so badly affected by local NHS experience that I needed to clear my head as much as get treatment. Both I needed very badly, and both areas were sorted through their help.

Our condition can affect us all so differently, but across the country there are some exceptional consultants.

Maybe it is a matter of finding them.. and never giving up.

I hope you find the help you need very quickly.

[honeybug]

OMGOODNESS Lou 🙂🌿🌸🦋

Remember me??? I’m so sorry about your plight. Can certainly empathize with your feelings sweetie. While I cannot advise about your situation because I’m across the pond I’m sending lots of support gentle healing hugs and positive thoughts your way. Hang in there lovely.

Love and prayers,

EJ 🙂🤗♥️🥰🙏🕊🌿🌸🦋

[LouLamb in reply to honeybug]

Hi,

I do remember you! Thank you for the reply. I am still feeling low in myself but not as bad as I did. I have been signed off work for all of next week so it is given me some time to focus x

[honeybug in reply to LouLamb]

I’m so glad that you got things sorted love. You’re right about not letting bad experiences make you give up. Just take a break and try again. I tried for 46 years to get my Inherited Erythromelalgia diagnosis Was treated appallingly by the next to last doctor; came home and cried and took a short break then battled onward. Got referred to my 🤩 Rheumatologist who diagnosed me via double DNA tests and finally confirmed my diagnosis and I have written proof I’m not crazy as so many doctors/their deplorable treatment of me were adamant I was nuts.

My mantra is as long as you can be your best advocate….never give up or in for the next attempt may be the answer you seek.

Please take care my friend. I pray you will be as well as you can be sweetie.

Abundant blessings.

Love and prayers,

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

[Vixen2]

Hi Lou. Chronic conditions can really bring us all down. Longterm health crap is crap. It’s very frustrating when you feel you’re not being listened to. I have RA & i have flare ups of a serious eye condition, (Iritis). Which is inflammation of the eye. I’ve had loads of procedures. Loads of steroid injections in the eyes. 2 cataracts removed etc. I often have a very bad flare up of Iritis in both eyes. On one occasion, i wasn’t in the mood to have another injection. So i was put on oral steroids. The first week i was like superwoman. I was polishing & cleaning everything. My flat was SPOTLESS!! I even polished my boyfriend’s head. (Can’t say he was pleased). I couldn’t sit still. I couldn’t believe my energy level. Then after 2 weeks. I became moon faced. I put on so much weight. (I felt so frumpy). People were giving me weird looks. I wanted to say to the rude sods, i don’t normally look like this! My moods changed all the time. I was up 1 min. Down the next. I felt awful. (Like i was having early menopause). I can’t remember if i was on them gor about 3 months. So u being on them for 1.5 yrs??? Steroids can affect your sleep aswell. Lack of sleep can affect your whole life. The fact they’re not listening, is frustrating. Have u thought of writing them a ‘formal’ letter?? Tell them how u feel. Really show them how low you’re feeling. Or having your own diary? I use my phone. I write everything in my notes. Can help. Have u tried to change your rheumatologist? Or maybe try putting your name down for some counselling sessions? I know u feel depressed at the mo. That could be the steroids. Try & tell yourself THIS IS ONLY TEMPORARY. These feelings are not permanent. Good luck with everything. I really feel for you. Please don’t give up. X

[LouLamb in reply to Vixen2]

Thank you for the reply. I really need to write to PALS or just a compliant in general but with feeling low I don't have the energy for that. I think I may ask my partner if he would be willing to do instead for me. He is pretty good at things like that.

The steroids are the worse and the weight gain. It took me 2-3 months to gain about 2stone. And a year later still have not manage to shift any of it. I am due to start methotrexate again once my viral infection has cleared up. The plan is to reduce steroids my 1mg a month. So I am hoping my ALT doesn't rise again on methotrexate and that I can finally be rid of the steroids. x

[Vixen2 in reply to LouLamb]

Once they reduce your steroids & put you on the Methotrexate. I’m sure you’ll get some sort of relief. I know about steroids. There can be positives. Real lifesavers. But then. They can have a negative effect on the body too. I hope you get sorted soon. It’s great your partner’s so supportive & understanding. With a longterm thing. We all need emotional (& physical support). Good luck x

[baba]

Sorry to hear you are feeling so down LouLamb. I can't offer any practical help, but sending you very best wishes. You have been given some good advice by other people.

We know you are a warrior from your previous posts and you Will be better again..

Be kind to yourself.

[Barbara17]

Hello, Loulamb. It’s so nice to hear from you again but I’m sorry it’s because you feel so bad. NHS care is becoming ever more difficult to get and I’m sure everyone on here is in agreement as so few recognise what we’re going through.. all I can say is for you to know that we’re all still here and all battling on. As you know the support we get here is what gets us through. So don’t give up. Have a good sleep, write down what you want to say and say it calmly and you will get there. Eventually! Sending 🤗 hugs and 🥰.

[LouLamb in reply to Barbara17]

Thank you. It is why I turned back to this community for some help. Believe it not i've had lupus for 10 years tomorrow and this community provided so much love and support to me in the beginning and throughout my whole 10 years. It has been a while since I've been here due to life and a lot of crazy things happening to me. I'm glad I came back because I once again got the support I needed. x

[jayfer]

Oh loulamb, life can be so cruel. I hope you have now had the help and answers you needed from the medics. If not make an appointment specifically to talk through your blood results. Worrying is no help although I do understand why you worry. I remember you losing all the weight initially, how proud you were. You can do it again once settled re steroids. Hope 2025 brings a good year with lots of happiness