So tired of beeing sick

kathe

I`am diganosed whit JRA (Juvenil revamtorid arthrist) got it when I was still av baby now I`am 26 years old. Not had any problems for years, but reallly got sick again last year .
I` am taking methotraxte 20mg injetions ( because I got so sick mye reuma reduced my does to 15 mg for some weeks youst to see if it helps . I`am not getting so sick from it now and the side effeckt are a bitt better but my atherist is getting worse. So not an easy choice to make, bettween the pain and the side effects) , enbrel (biologic medicine ) 25mg injections 2 days a week (50mg a week).
Olso taking folic acid 6 days a week ( everyday I not take the methotrexate) , vitamins, relifex and paracet ( pain medication), and so on

No I got B12 and folic acid absence, so I take B12 injetions to and more folic acid. I also have got an olcer som I take medications for that to.
Recently one of my toa nail`s is missing, I lose hair, getting av rash and low blood % , tired . Any one having det same side effects?? I`m really getting sick of getting this side effect .

Have spoken to my reuma and wating for my next appointment there , because then I`m maybe getting to try a new medication. Not felling that the biologic medic enbrel i s helping me. Not one day whit out having pain.

Any one that have some of the same experience??

Hope you understand my bad english but I`m norwegian.

dreamdaisy

Hello Kathe, your English is a darn sight better than my Norwegian. Firstly I am so sorry to read about the struggle you are having - and have had for so long. The medication is only part of the answer and yes, it can cause terrible side-effects.

I am on a similar drug regimen to you, weekly injected meth with fortnightly injected humira (an anti TNF treatment), I take folic acid three days a week, and sulphasalazine daily. I also take co-codamol 30/500 for pain relief. What is concerning me is that you say that a toe nail is missing and you are developing a rash. What does your rheumatologist say about this? You say you are hoping to see him soon and I am pleased about that.

With regards to the sickness I know that anti-emetic meds can be prescribed and some people on here suck peppermints or drink ginger infusions to help in a more natural way. I find that sugary Coke makes me feel better! It can take time to get the balance of meds and dosage right, and I think you might benefit from a meds review. Tiredness is part of arthritis being active (from what you have said I think yours is but I am not a doctor) and I have had trouble before with a low iron count in my blood - iron tablets sorted that out.

I hope you are able to talk to someone who deals with your case very soon as you don't sound at all well. As for the pain well, that also tends to be a constant. It's tough.

Please let us know how you get on, yes? I hope someone can help you and very soon. I wish you well. DD

phoenixoxo

Hi kathe,

I’m sorry that you're having a difficult time at the moment. It's frustrating to suffer so many side effects from treatment without experiencing any benefits. Enbrel has worked well for me over the past few years, but for some reason my consultant decided that I should try Humira for about eight months in 2009. Unfortunately this made me unwell and had no positive impact on my arthritis, so I insisted on returning to Enbrel.

As DD says, I hope your next appointment with your rheumatologist is useful, perhaps resulting in a new drug regime. In the meantime, do contact your doctor if you're worried about anything.

Best wishes,
Phoebe

frogmorton

Oh kathe

I am so so sorry you are suffering so much and the meds are giving you such side effects.

We would say you are between a rock and a hard place. More meds = less pain BUT more meds = more side effects.

Please do not apologise for your English I think it is really good

I hope the rhuematologist has something planned for you which might help.

Love

Toni xxx

Colin1

Hello Kathe
Sorry to hear your so down and feeling so sick, i too get sick of being sick i cope 95% of the time but there are time when i dont know where to turn, what to say, or what to do. like you the medication really affects me, I no longer have Methotrexate as it makes me so ill i was the same with most of the anti TNF drugs. oh yes i have RA and PsA However i am understand how it can all effect your life style. One way of coping is to spend time on this Forum the people here are really nice and understanding. Many of them have gone through the same things you have gone through. Its a good place to hang out with people who understand.
Hope your Feeling Better soon.
Colin

stickywicket

I understand your English very well, kathe, and I'm so sorry you're having such a hard time of it with your arthritis and medication. It can be a very difficult balance, getting the pain to a tolerable level while ensuring as few side-effects as possible from the meds.

I'm glad you are to see your rheumatologist as he/she is the best person to deal with your situation. Low iron levels can be due either to the meds or the disease, there can be some hair loss with methotrexate and a rash too but I think you should maybe get the rash checked out. Is the lost toe nail connected to the meds? I haven't heard of that as a side-effect.

I do hope you will soon feel a bit better.

earthspirit

sorry you are having such a bad time with your RA. i cant say much about the meds as i have only just started on sulfasalazine myself but i do know about pain.

cool damp facecloths on the sore joints do really seem to give a bit of relief & sometimes just lying down resting, moving the cloth around that might help you a bit. its difficult when you have multiple joints affected at the same time but a bit of chill out time can give you the space you need.

hope you are feel a bit better soon

dreamdaisy

Hello Kathe, how are you feeling today? DD

kathe

Thank you for all the answers...
I`m at work in the noth sea so I have`t had the time to answer you before...It hard to work, but work means eyeryting to mee..

Still wating to get a time to see me ruma doctor, I`ll will call them at monday..because I`m tired of waiting...

My regular doctor means that the loos of the toa nail is a side effeckt from the drugs. But I got a time to se a specialist in hostpital september...But tired of waiting.. I going to ask my ruma docotor about it too....

Of course I`ll lett you now how it goes...

To day my feet,legs and anckel are hurting, specially when walking inn stairs...

Thank you foor all the suport , great to now that there are many people out there whit the same problem...

dreamdaisy

You are in the North Sea? :shock: Wow! :shock: To me that means you are working on an oil rig or a trawler - I don't know a great deal about these things :oops: - but I am amazed that you are able to do whatever it is you do. Your loose nail could well be a side-effect of the meth etc but I think it needs checking by your rheumatologst, the rash too. September is far away, I hope you are able to see someone sooner. We are always here so talk to us whenever you can, OK? We can offer cyber support as those of us on the same meds understand how difficult things can be. DD

kathe

Yes i work as an eletrician in an oil company her in norway on an oil rig...
It`s hard, but to work means so much to mee.. I really love my jobb, but sometimes I have to cry mee self to sleep because of the pain.. So it is not easy but it is my choice.....And I sometimes have the same pain when I`m home doing nothing...

I now take 15mg of meth injetions, before 20mg... My reuma doctor reduced it because I was getting so sick from 20mg, really neausa, dissy, and so on..But she told me it the arthrist was getting wors I had to take 20 mg agian..But I have staid on 15mg, and I have taken a choice that too have moore pain and not getting so sick when taking it...It not an easy choice and I`m goring to talk to me reuma doctor about it when I`m going too see her..`But really I think it is better to feel the pain sometimes and not bee so sick.


In september I`m going to seee a specialist surgeon about my toa nail...But I`m going to ask my reuma doctor too about this to things... My regular doctor things that is a side effect of the methotrexate....

Going to call my reuma nurse on Monday because I have`t got an apointment to see my reuma doctor in the mail yet and som tired of waiting....

stickywicket

kathe wrote:

she told me it the arthrist was getting wors I had to take 20 mg agian..But I have staid on 15mg, and I have taken a choice that too have moore pain and not getting so sick when taking it...It not an easy choice and I`m goring to talk to me reuma doctor about it when I`m going too see her..`But really I think it is better to feel the pain sometimes and not bee so sick.

These are the difficult choices we sometimes have to make, kathe. In your situation, I wouild do exactly as you have done but I very much admire you for holding down such a tough job in the circumstances.

I think you're doing the right thing in calling your rheumatology nurse. They are the people who can, hopefully, help to make your life a little easier. Please let us know how you get on. And a few of these to help keep you going. ((()))

kathe

Thank you !!
I`m so happy I found this forum and to get support from people that now what arthrist is. Not many people understand the struggel we go true... And many people think that it is old people that get artherist and not young...

Your qoute is so true stickywicket
(The length of a minute depends on which side of the bathroom door you are standing.)

dreamdaisy

The pain is your body's way of telling you that there is something wrong, either the arthritis is active or joint damage has happened. I admire you for holding down such a strenuous job, your life must be very interesting. Ask the nurse or your doctor about an anti-emetic drug, it can reduce the nausea, or it maybe that you need a review of your meds, it may be time to try something else. Take care. DD

kathe

I got an anti-emetic drug, but after i reduced my dose from 20mg til 15 mg i feel better when taking it..
I`m going to see me reuma soon and then take a reviw of my meds..:)

I really love my jobb, and it meens so much to mee that I can do it...But it is hard sometimes, youst getting up in the mornings can be difficult...But when you have a jobb you love anything is posible... I work 14 days and then have a 1 month free..soo it is a good deal:)

dreamdaisy

What a good attitude you have towards your job and your life, you sound strong and determined and that is often what gets us through the rougher times. You are obviously doing all you can to help yourself but the sooner you see the doctors the better as something is obviously not suiting you. You must have a very interesting job - challenging but worthwhile. I am very happy with mine - I am self-employed which makes life a little easier and it gives me a reason to get up - but yes, there are some days when getting up is very hard indeed! DD

kathe

Thank You ..
Seams like you are a strong person to....But of course sometimes it`s hard and I youst feel like craing, that I think we all do... I think that it is really inpontent to stay strong and have things in your life that give you meaning ...It`s so importent to have things to do so you can forget the artherist for a will..
So pleased to hear that you are happy whit your job too....Thats so importent...

frogmorton

Hi kathe

I was going to suggest ant-emetics too :? shame they only work at 15mg too. I think you are already injecting yours? as some find that makes them less queasy.

I Hope that the rheumy can help - maybe a depot steroid jab or something and I ESPECIALY hope that your month off is imminent!!

Love

Toni xxx

stickywicket

kathe wrote:

I think that it is really inpontent to stay strong and have things in your life that give you meaning .

I would agree wholeheartedly with that, kathe. It all makes so much difference.

tillytop

Hello Kathe - and welcome. I am sorry for joining in so late on your thread.

I am so sorry you are struggling so much with the methotrexate and I really do sympathise. I have tried methotrexate twice, for a year or so each time and I just couldn't cope with the side effects. Injected meth actually made me feel worse than the tablets :roll: so eventually I just had to conclude that it didn't agree with me. As you say though it is really hard to find an acceptable balance between the drug side effects and the arthritis pain.

Thinking of you.

Tillyxxx

kathe

Tillytop
I actully got worse from the tabletts , now when I`am taking 15mg methotrexate the side effects are better.. But I still have loos of hair and a toa nail that is missing...but that can be from all the odder drugs I`m on....... But my artherist is not good when taking 15 mg, I was better on 20mg. But i have taken a choice there...Not easy but until I get an other medicin I have to.

frogmorton
I have tried anti emitc tabletts but don`t feel that is working four mee.



I called my reuma nurse to day and got a time to se my specialist reuma doctor in july...So loooking forward to that!

dreamdaisy

Oh, that's good news kathe, I am pleased. July is not too far away at all, plesae let us know how you get on, yes? And you are right about staying strong - arthritis only defines us if we allow it. I am a teacher who happens to have arthritis, not an arthritic who happens to be a teacher. DD

kathe

yes lett you now!! of course..:)
I agree whit you!!
It`s not the artherist that own me...That is so importent, not to lett the artherist take over your life...:)
July is not fare away , so I hope I get a letter in the mail soon...

kathe

To day I got the appointment 28 sep. to se the specialist on skin and toa nail in the mail and so happy about that...Really hope that they find out way my toa nail is falling of...They get black and youst falls of..So strange my regular doctor don`t now what it is...But maybe it is a sice effect of all the meds I`m on..

dreamdaisy

At last you are seeing someone about it and that is a good thing. I know that those with psoriatic arthritis can have trouble with their nails but this sounds somewhat different. Good luck with the appointment and please let us know what they say. DD

kathe

Yes I`ll lett you now..:)
It`s not so fare away..