new to the forum

lilbluebin

Hello everyone,
Iam new to the forum...m really glad i found this and i have been reading the posts n happy to know that here in this forum, people are there who have similar problems i have been having. M 23 years old now n m diagnosed with arthritis when i was 22 years old.. though i have been having pain in the hip, neck since i was small but i didnot see this arthritis thing coming. My blood test shows all normal, except for the ESR which is pretty high. It started with pain only in my right leg first and then now all the joints are involved. I have been to many doctors but now finally diagnosed. But m really having difficulties in my day to day routine since m still a college student. Some days i wouldnt be able to walk and some days i would think m better ... many people wouldnt understand the pain n m having. And then maybe m a little depressed with all these happening to me. Well i hope i find people who understands the situation in this forum

prefabkid47

Hi lilbluebin
Welcome to the forum,as we always say shame you needed to find us in the first place...........
You will find us a understanding and supportive crowd here and we all speak from personal and a wide range of experiences and like you we all have good and not so good days.
Feel free to post anytime and we will do all we can to help.
Ron

lilbluebin

Thank u. Wishing everyone gets better each day May i ask for how long will this treatment take? I have been on steroids and hydroxychlroroquine for almost a year now ?

barbara12

Welcome to the forum lilbluebin, you have come to the right place, we all understand in our own way some more than others,I am a lot older at nearly 65 but like you have struggled to get a diagnosis..have you been referred to an orthopedic consultant, they can get the MRIs and X rays done..its no wonder you are depressed, a lot of us go through this, so you are not on your own, you talk to your GP about how you are feeling...I do hope they get a move on with your treatment..x

lilbluebin

Thank u so much. I feel much better that i have found this place. I have been struggling n wanting to share the difficulties. Well my doctor is an orthopaedician but he has not advised me for any xrays or MRI.. I wonder when will i be able to stop taking the steroids

barbara12

I have only had steroid jabs, so I dont know but you do need to ask your GP some questions..he should at least refer you for some X rays to see what the damage is..if you put a question about the steroids you are on hopefully someone will come along with some answers..

lilbluebin

At first i had trials with deflazacort n hydroxychloroquine but it had no effect then i had to shift to prednisolone while this worked i had edema in my lower limb after few months as a result of fluid retention(as a side effect of prednisolone) and now m back to deflazacort n hydroxychloroquine again, and due to steroids i even developed acne all over my face, have tremors. Does anyone get tremor due to steroids? Also my weight has increased.. all these are side effects they say

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. I'm familiar with the med hydroxy (it's one of the milder DMARDs) and prednisolone (I took that for three years then spent one year weaning myself off) but not deflazacort so I conclude that you have some form of auto-immune inflammatory arthritis, is that right? I have psoriatic arthritis and osteo, my meds for the former do nothing for the latter. I am considerably older than you, and similarly the arthritis diagnosis came as a surprise (I was expecting diabetes after years of inhaled steroids). Yes, the weight gain is a side-effect of the pred, I'm not sure about the trembles though and yes, you will probably have to take meds for years to come: we have the kinds of problems that a short course of meds won't repair. I wish you well and I hope we can help with information and support. DD

PS Do you live in the UK?

lilbluebin

Hi dreamdaisy, thank you for the information. No m not from UK. And m not sure about what type of arthrits, my doctor hasnt explained to me properly he just said that i have arthritis and that some arthritis doesnt show up in blood reports and all. Only my ESR is really high. M just guessing it has to be seronegative but m not sure which and what to do yet. I have read about excercise making it better but my doctor says not yet since m still having pain. Do you think i should try physiotherapy ?

frogmorton

Hello Lillblubin

Welcome to the forums from me too

I expect your doctor will want your ESR to come down a little before he considers reducing the steroids. They are effective, but as you know they have side effects. My 18 year-old daughter has been on them at a high does for over 2 years due to leukaemia and the acne was pretty awful.

They gave her a low-dose antibiotic in the end to fix that. She also had the shakes and could be pretty tearful on it.

I wonder whether your consultant would consider adding another different medication a DMARD like hydroxy to help you.

Love

Toni xxx

By the way your English is excellent!

dreamdaisy

As your illness is caused by an over-active immune system physio won't make any difference at all to the disease and how it affects us. Our treatment is based on having the immune system suppressed which is what the hydroxy does, over here there are a further two DMARDs, namely sulphasalazine and methotrexate, I began with sulph then meth was added. I'm surprised that your rheumatologist has not added one or the other of those instead of the pred, it could be that the hydroxy is not for you but one of the others could be more effective.

When I eventually reached rheumatology my bloods showed that my ESR and CRP were in the 160s-170s so they were high! I was classed as having an auto-immune inflammatory arthritis but that label was later changed to psoriatic arthritis, one of the many sero-neg kinds but my meds remained the same. I was put onto pred when I had to come off everything for three months but I made the decision to come off them, I had the moon face and weight gain, I was given added meds to help me avoid osteoporosis and I got fed up with all of that. All of our meds are powerful but pred is one of the strongest with the overall effects it has on the whole body. It has a role to play but it does not really affect the root cause of the trouble, it cons us into feeling 'better' when, in fact, everything is still rumbling away. DD

lilbluebin

Thank u so much dreamdaisy, i got the moon face too... pred is reallly strong but while on steroids my ESR level comes down abit. Well i have doctors appoinment day after tomorrow n i hope all goes well. Thank u again.

dreamdaisy

That's what they are supposed to do but maybe by not enough. I am familiar with the approach in the UK but nowhere else - I hope the appointment is a useful one, please let us know how you get on. DD

frogmorton

Yes best of luck - oh and my daughter also has some nasty stretch marks from her steroids.

I hope they can sort you out. Look forward to hearing how you get on

Love

Toni xxx

frogmorton

Wondering how you got on at the Dr?

I hope you got some help.

Love

Toni xxx

lilbluebin

Thank you frogmorton. I have been to my doctor n my ESR level is same.. good news is my hb level is normal now and my doctor has told me to start taking my steroids alternate days... he's planning to put me off the steroids as soon as possible i guess to stop all these side effects iam having. M doing quite well now... n lets see if these alternate days will work or in vain..

lilbluebin

And i would like to know how is ur daughter doing? And also in how many days her acne got better... m also taking some antibiotics for it. Hoping itll work..

frogmorton

Hi Lilbluebin

My daughter's acne was almost controlled by the antibiotics, but not really. It was he fact they seemed to leave brown pigmentation - do you know what I mean?

She came off the steroids just before Christmas and I would say any spots now are the odd hormone type you get. She is much happier - the state of her skin really got her down.

I am pleased some of your blood levels are down and that the Dr is happy to try the steroids every other day. I hope the bloods stay good and in time you can come right off them.

Thank you for asking my daughter is well - finishes her treatment for leukaemia in a few months time

Oh by the way did you get any stretch-marks? Lucy did, but it might have been because she was still growing.

Take care

Toni xxx

lilbluebin

Hi, m really happy to hear that your daughter is doing well n that her treatment is ending Well i got the stretch marks too... but m not sure if its the steroids alone... its my first day on taking steroids the alternate days but my neck and hands are already in pain. I thought i was doing quite well.. this makes me really sad. One moment i thought m getting better for sure this time and then *sigh* some pain starts again somewhere. Its really frustrating

frogmorton

Oh I am sorry Yes BIG sigh

I really hoped you would be able to leave the steroids behind. They are so effective, but as you know they do have side-effects

Lucy's stretch marks are wide and on her hips. The consultant said it was the steroids.

I hope you will be able to get back to the Dr ASAP to discuss other options. I think DD mentioned them before the Disease Modifying Anti-Rheumatic drugs.


Thinking of you

Toni xxx

lilbluebin

Hello frogmorten ... thank u for ur concern... yes i have already gone to the doctor twice n now my ESR level has increased yet again... i feel so helpless n now he has added leflunomide along with my steroids n hydroxychloroquine... n m tired of all these side effects too.
I hope ur daughter is doing well... wishing her a quick recovery