My meds make me feel worse : I dont know if this... - LUPUS UK

LUPUS UK

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My meds make me feel worse

MK83 profile image

I dont know if this happens to anyone else but my meds actually make me feel tierd and have dry eyes amongst many other things.

Before meds i feel great just a bit of aches and stiffness.

I do tell my consultant but they say itl get better 🤷🏽‍♀️

35 Replies

What are you on ? How long have you been on them ? If you are taking hydroxchloroquine and /or mmf it takes at least 8 weeks to start to work and 6 months for full effect so you may have a way to go yet.Dry eyes arnt uncommon in us lupies as we often have secondary sjorgens

MK83 profile image
MK83 in reply to Spanielmadlady

Im on MMF 1500mg 15mg of steriods

I have b6 and isnopized for other reasons but should be stopping that in 6 week

Been on there for 7 weeks

Spanielmadlady profile image
Spanielmadlady in reply to MK83

The mmf takes a long time to work.ive been on 2gms for almost a year.

MK83 profile image
MK83 in reply to Spanielmadlady

When did you start to feel the "good " effects?

When you say 3 months to kick in and 6 months to take full affect does that mean to feel what im not feeling?

Spanielmadlady profile image
Spanielmadlady in reply to MK83

It takes 8 weeks for mmf to start to work and to gain the full effect of the medication takes 6 months.its hard to say it might not work for you...you might need something else added in or need to try another drug.its a long process finding the right drugs combo that works for you. I take hydroxchloroquine as well as mmf .I started on azathioprine first and after 7 weeks developed drug induced hepatitis and had to stop I then had to wait 3 months for my liver to recover so that all took 5 months I then had to try mmf so it's all taken 2 1/2 years to get where I am now I'm afraid .

MK83 profile image
MK83 in reply to Spanielmadlady

Ohw wow thats a long time.

I know that my bloods have gone back to normal but the way i feel its not nice. My liver and kidneys were not good but now they are back to normal.

So guess il keep going to see how it goes. Mehh i just want one day to not feel tired. 😣😣

Spanielmadlady profile image
Spanielmadlady in reply to MK83

Mine are normal now as well.fatigue is something we all end up stuck with I don't think it ever goes.youve just got to learn to pace yourself.lupus meds are also about preserving organs for the future too.

MK83 profile image
MK83 in reply to Spanielmadlady

Worst thing is i do nothing as im still recovering im doing nothing and its there. Cant be feeling like this every day all my life i have a job 😣

Spanielmadlady profile image
Spanielmadlady in reply to MK83

It is what it is...I'm currently in sleep mode where all i want to do is sleep but I am due my b12 Injection.i think most lupies will tell you fatigue is the one thing we all struggle with.stay out of the sun as that can make you feel worse too x

MK83 profile image
MK83 in reply to Spanielmadlady

Im not a fan of the sun so all good.

Does the b12 help with tiredness?

Spanielmadlady profile image
Spanielmadlady in reply to MK83

I have b12 deficiency anaemia which is another AI illness fatigue is one of the symptoms along with headaches and pins and needles .you may have to ask your employer for changes at work to help you.uv through windows and from light bulbs can make you feel worse.you can take a b12 supplement as its water soluble so you just pee out what you dont need. X

BonnyB profile image
BonnyB in reply to MK83

It's very hard in the beginning. I was started on hydroxychloquine. Felt worse before I felt better. Started November. It has helped with fatigue but I still have to be careful and pace myself or I'm struck down. I ended up having 3 months off work. There was no way I could go. Been back a couple of months now. Did phased return. I hope you feel better soon. I feel for you because I panicked. Thought am I ever going to feel normal again. I do, but still have off days. X

MK83 profile image
MK83 in reply to BonnyB

I haf 2 months off. Im on a phased return at the moment i know its only early days for me but i dont wana feel this allll my life im young have a whole life ahead of me. :-(

BonnyB profile image
BonnyB in reply to MK83

I hear you. Its really tough some days. There's no doubt this has impacted mine and my families life. My teenage children lost me for a while . Slowly I'm clawing my way back to living again. I will play netball again. I will have cocktails .....I hope your meds kick in soon and you will get your life back x

MK83 profile image
MK83 in reply to BonnyB

Loll thats what i say one day i will have a glass of wine again

Thank you xx

larainehudson49 profile image
larainehudson49 in reply to MK83

Hi, when you mention MMF are you referring to Mychophenolate? Thanks

MK83 profile image
MK83 in reply to larainehudson49

Hi yes i am

Im anemic to but they havent given me anything for it yet as they want to monitor ny levels for now.

Didnt realise it was a AI illness. Intresting

Spanielmadlady profile image
Spanielmadlady in reply to MK83

It may depend on what type of anaemia you have as there are about 6 different types.b12 deficiency anaemia goes hand in hand with other AI illness such as AI thyroid disease .x

Why are you on 15 mg steroids plus MMF if you only feel minor aches? That doesnt sound right to me. Minor aches can be solved by NSAIDs and what not. Also usually first drug they give you is hydroxyqloroqine. Did you ever try that?

MK83 profile image
MK83 in reply to miccika1

Back in march when i got admitted in to hospital i didnt have minor aches i had aches and pains which made it hard for me to move. My liver and kidneys and lungs were inflamed so they put me on 45mg of steriods, slowly weaning down. Now on 15mg and going on 12.5mg from friday.

Im not in any pain anymore just have minor aches and stiffness in the joints muscles

I agree I cant understand why there is no hydroxchloroquine but there are many reason why people cant take NSAIDs...I cant.im steroid dependent because my lungs flare if my steroids go below 7.5 mgs 🤷‍♀️

MK83 profile image
MK83 in reply to Spanielmadlady

I will question my consultant at my next appointment.

Wish this was all bad dream 😣

Spanielmadlady profile image
Spanielmadlady in reply to MK83

I know my lovely dont we all but it isnt so it's better to work with it then fight it.i ended up off work for a year and then in the end wasnt able to return as I worked in an high infection unit.6 years on I know deep down I couldnt do my job. keep smiling there is still life and laughter to be had weve just got to do things differently now 🤗 xxx

MK83 profile image
MK83 in reply to Spanielmadlady

:-(

I will fight it im young got my whole life ahead of me. Just hate it at the moment.

Spanielmadlady profile image
Spanielmadlady in reply to MK83

I was only 43 when I became Ill and believe me working with it is far better for you then fighting it but maybe you need to learn the hard way .Good luck

No 1st drug they gave me is MMF which withing 3 weeks brought my liver and kidney function back to complete normal and my bloods have gone back in to normal range. They were craxy back in march.

I do tell my consultsnt how i feel

Tierdness

Hairloss

Heavy eyes

Trembling

But they say its the meds ans itl get better

Spanielmadlady profile image
Spanielmadlady in reply to MK83

I think you need to be patient a bit longer.life doesnt return to how it used to be I'm afraid lupus is always throwing a spanner in the works .once you accept it and learn to work with it you will find it all easier to manage .life from now on is about managing a chronic life long illness .x

Hang in there, it will work! MMF took 4 months until I saw an improvement but I'm feeling so much better now. I made the mistake of giving up on it after 11 weeks the first time and had to start again. You could discuss a slightly lower dose with your consultant, especially if you are petite. I take 1g now instead of 2g. I take both tablets in the evening as they make me feel tired and this seems to work. Also, ask your consultant about vitamin D if you are not already taking it. This initially helped me with aches and pains and should be taken by those of us who avoid the sun. Hopefully you will start to feel the benefits soon.

After taking Myfortic 720mg per day, my vision became worse when looking from distances. Doctor advised to wait 6 months before going to eye specialist....

MK83 profile image
MK83 in reply to Kim_21

My vision is blurred but they said its steriods

Kim_21 profile image
Kim_21 in reply to MK83

My doctor said the same, but even after reducing myfortic and prednisone, my vision doesn’t go back to previous, still blurry

MK83 profile image
MK83 in reply to Kim_21

Oh after lowering my dose mine has but i have a weak right eye anyway

Dear MK83,

Can I just offer you some 'General' comments, regarding Medication? I have a slightly different Auto-Immune Condition, to yourself (ANCA Vasculitis), however the Treatment(s) are similar.

There are a 'number' of Immune Suppressant Drugs available so, if you Really don't 'get on' with one, it can be changed. All that said sometimes, indeed quite often, Drug Regimes have to be changed- both in terms of Drugs and Dosages. Commonly, during this - shall I say 'Settling in Period'- it is Not unusual to feel a Bit Down.

If you are Still, after six months or so, NOT Feeling 'Right' then DO ask for a review... or, at least, Tell your Team at you next Review. (I had a very dear friend, some years ago now, who was given a Drug that REALLY didn't Agree with her. The Poor girl, was 'Snappy- unlike her- in pain- mainly because she just couldn't 'Go'- began to 'Smell'- most embarrassing for her, and she felt 'Sick' a lot.)

So MK83, Stick with 'Everything' for the time being.... but DO 'Shout' if Things don't improve.

Kindest Wishes

AndrewT

MK83 profile image
MK83 in reply to AndrewT

Hi Andrew

Thank you for your message. I will most defo stick with this for now and i need to be hopeful things do improve.

I like the "settling in period" thats exactly where i am at the moment just waiting to be fully settled suppose im not used to this at all.

I have a review every 2 weeks,next review is next week so again i will mention it to them but they say i need to give it time to. Just me being impatient i suppose.

Thank you for your encouraging message.

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