Need advice anything please

magicdragon

Sorry i havnt been on for awhile i have been glancing through the posts when i can but alots been happing.

Its 5.33am i can't sleep i hurt all over and im just worrying about everything i suppose.

For people who dont know im 24, student trying to study Zoology and i have Psoratic Arthritis. Its mostly worse in my knees but also in my ankles,wrists and fingers. Ive also been having pain in my back and shoulders and i have to walk with a stick which isnt helping my wrists but i havnt got much choice due to my knees.

Basically i had new blood tests done i think late sept and they hadn't forwarded my CPR levels through to my GPs like they normally do. My rheumatologist for about the last year has been saying at every appointment and so has my dermatoloagist that i should start methotrexate and gradually they have been pushing it more and more but they have left it up to me. Ive been trying to manage on my sulfasalazine but now my pain meds are just uped and uped.

I rang the hospital to ask them to send the CRP results back to my Gp as i thought this would help me make a descision. This was last friday and on monday i had a voicemail from my rheumatologist asking to ring and when i had got home the rheumy nurse rung to say my levels are 42 and last time they where 15 and since then my pain has got worse so im thinking they are still that high if not higher.

I also went to my doctor about my wrists as i didnt think this was arthritis pain i was told it was and they are very stiff and swollen with my one finger bending in,

So i have an appointment to go to see the Rheumatology nurse, with my gp and the rheumatologist and the other nurse they seem to be understanding where as the one im going to see ive allways had an issue with as when i tried to explain my apprehension she allways made me feel like i was being stupid and i just feel like saying its easy for you to say you dont have to take it !

Anyway my bestfriend is coming with me im a strong person but with this and when you feel pressured its not easy and i tend to fall appart and at least now i know ive got someone batting my corner. Also im taking a whole list of questions with me.

Also due to my concern incase i cant tolerate it there keeping me on sulfasalazine as well for two months.

So i just have some questions of your experiences on methotrexate ... i know everyone is different but i feel like im stepping of a cliff and id just like to know where i may land as i feel abit blind.. ive read the everything but i just want to see the average experiences you have good and bad no sugar coating

Also with anti sickness tablets can you ask for these in advance?

Also regarding methotrexate and it harming your fertility?does it decrease your fertility the longer your on it? i just dont want to take my options away here

Im in uni monday to wednesday so i have heard some people say they can be sick for half the week so maybe take it thursday?

folic acid do you have to ask for that or do they give you that automatically?

Also what should you do if it makes you very sick?

Also what helps you have a normal sleep pattern?

This is all i can think of for now, i been so self sufficent and im not now im sitting here crying so much because i feel like im being damaged from the inside and i cant stop it! and my only choice is to take this toxic drug and the fact im doing science isnt helping one bit before i know the worse case senaro

I had my dyslexia tutor say to me she didnt think i was coping and it was to much to bare! and that maybe i should go down to part time

I feel like im failing in everything and it doesnt help with peoples attitudes!

Any help il be so greatful

Love and hugs to all

Magicdragon *i wish i was*

tillytot41

Magic,i cant help you with the meds thing as i am just starting my athur journey and am in the same pain as you,just want to send you a big but gentle hug as i so know how you are feeling.Im 41 but my health troubles started in my early 20's like you but with a bad back that needed surgery.This year i have had to close my business due to arthur.
Im sure you will get lots of advice about the meds and i will watch with interest,this other drug they want to put you on sounds horrendous!!I dont like the sound of it at all.
I spoke to someone yesterday who tried homeopathic remedies for her rheumatoid arhtritus and got very good results indeed so i am certainly going to look into that as well.I dont like all these pills they put into me either,im on loads at the moment and really hate it.But i suppose some people do get good results with conventional medicine as well and dont always get the side effects.
Its all very confusing.
Ali xx

ritwren

Magicdragon I'm so sorry to hear you're having such a hard time. It's a good idea to bring your friend along with you for support when you have your next appointments. I am on methotrexate and have PA and OA.

Pain.
Regardless of what disease modifying tablets you take, I think you may need your pain relief sorted out a bit more too. Would it be worth approaching your GP and asking for a referral to the pain team, it can take a while to get an appointment but they may be able to help. Meanwhile, are you on anti inflammatories? something like Celebrex or another strong one prescribed by GP, your disease is obviously very active at present and they should help a bit. Also have you tried any patches for pain? I use Bru Trans patches which are applied once a week and also Tramadol and if I need it Solpadol as well.

Side effects from all meds vary and some folk get some but rarely all of those described. It's worth remembering that when you read up about meds they have to give all possible side effects.

Sickness - you can ask GP to prescribe anti sikness tablets at the same time as your methotrexate. It will be no problem at all to get them as nausea or sickness are very well recognised side effects.

Folic Acid will be prescribed at the same time as methotrexate. Some people take it a couple of times a week, others only once it just depends.

Fertility, well all I know is that they say not to get pregnant while on it so from that one would assume it does'nt affect the fertility but any developing pregnancy.
A lot of meds are like very dangerous to a growing baby this but don't actually impact on the ability to get pregnant. However infertility these days seems to be higher than years ago judging by the number of friends I have who have been trying to get pregnant but not succeeded.
Sleep, I'm sure you are doing all the usual things like not drinking tea/coffee/coke with caffeen for quite a few hrs before bed. With everything thats going on in your life right now I'm not surprised you are having a hard time sleeping. Proper pain relief may help, also simple things like is your bed/matress comfortable? I recently got a memory foam pillow and matress and it helps. Do say to your GP he may prescribe something like amytriptyline which some people find helps with sleep as well as nerve pain.
I'm sure others will be along soon to help.
Good luck and hang in there, do let us know how you get on.
rita

dorcas

Hi magic dragon
Nice to meet you ':)' but sorry you are in the midst of all this turmoil.

I agree with everything Rita has said///

I've had PA for about 13yrs now and like you wanted to avoid going on any heavy duty meds.... however over time and with the effects of PA getting worse I finally agreed to take whatever the rheumy thought would help.

Like many others in the forum I've been on a variety of meds over the years including MTX. Initially I was taking it orally but had to come off due to LFTs going off the scale and the horrible nausea/ eventual vomiting (sorry to describe this on a Sunday morn ':oops:')

I was put back on it last year in combo with my anti TNF but by injection...and so far I've tolerated the MTX. The folic acid is important and I'm sure you will be prescribed that too.

All of these heavy duty drugs have side effects..but the good thing is that we are well monitored with regular bloods etc.. and any side effects dealt with as and when..':roll:' ''

Can only suggest from my own experience that it's better to try to halt or at least slow down the PA if you can..... Mtx might be what is needed. rheumys do think about what is best for us.

You're not being stupid about this decision just understandably cautious. ':?'

Let us know how you get on . irisx

tkachev

Hi Magic dragon
MTX helped me a lot and the nausea was worth it just to have much less pain .It wont effecrt your fertility but if you ever want children you would need to come off MTX for quite a few months to clear your system.
I really hope it helps you and you get a better quality of life,help you sleep better and help with your studying-(less pain and disruption).I was really nervous of taking it at first and had to be given it by the Rheummy nurse in her office because I was so worried about it.But it definately helped me by lessening the inflammation and pain.I have R.A
Good luck
Elizabeth

woodbon

Hi, I'm so sorry for how bad you feel, I only have oa.and I'm sure that it must be hard for you, as this time is important to both work hard and play hard! :shock: When they get your medication sorted out you should feel an awful lot better and be able to live life to the full.

I'm glad you've got a friend to go with you, as it helps you to be strong but its someone else to remember for you and maybe right down any important facts you get told. Going to the rheummy often involves remebering all you want to say and all the things you are told, I'm bad at that, I feel certain I'll remember at the time, but when I get home the information has all got twisted up in my mind and I'm uncertain! :oops:

Good luck, and lots of love and best wishes, Sue

magicdragon

ritwren - is it right it will help keep the inflamation down and the diease progressing ... thats if it works? but the pain you get from the damage you allready have wont go away?

Regarding the pain team ive been thinking about asking but after my last altercation with the ocupational therapist basically telling me im a big faker wasnt good and all i wanted was help and advice ... its made me wary.

Also i best to ask rheumo or gp?

Also should i get the anti sickness from the nurse or my gp? i would like to just have them there just incase as i want to try and limit the impact to my work as much as possible

Regarding pregnancy i know all about that its just about the fertility i read in a leaflet i think i was given from here that it can affect fertility? i just wanted to know if this means the longer you are on it the more your fertility goes down?

dorcas i take it you give yourself injections and they show you how to do this?

Do you mind also answering where you have your arthritis and what age you where when you started?

Also ive been thinking about maybe taking something natural along side it ?

And a very weird question i dye my hair do they say not to when your on it?

Also ive had help from a friend with cleaning but i could do with some back up for when she cant and was wondering if anyone has called there local social services about if they have cleaners etc they trust?

ritwren

Magicdragon, hope you are having a better day. I wonder if you've made an appointment to see your GP to see if you can get help with more effective pain relief as you seem to be in a great deal of pain at the moment.
From what I know about methotrexate the purpose is to stop the disease doing any more damage and reduce or stop flare ups. As it starts to work it will reduce the pain you already have but it is not a substitute for painkillers and/or anti inflammatories. I've been on it since august, and my foot where I had the worst part of a bad flare up is now much better. If you decide to go ahead with the methotrexate they will start you off on tablets, not injections, everyone starts with tables first. They increase the dose every couple of weeks until you are up to your full dose. It will take several weeks to get up to the dose they want you to have.

If you need to be changed over to injection then they teach you how to inject yourself and give you a bin to dispose of the syringe safely. It's much better than having to attend hospital every week just to have an injection. Many practice nurses/surgerys don't deal with cytoxic injections so you'd most likely have to go the whole way to the hospital if you don't do them yourself. Once you get used to it I find it easy enough and more convenient than having to travel to hospital.

With regard to the sickness you will need a prescription from your GP for the tablets but as I say that will be no problem. You can get one at the very start of your treatment while you are starting the tablets.

I'm really sorry to hear you've had such a bad time with the OT, nobody should be made to feel they made you feel. You could ask to be referred to a different one as they can help with aids etc..... things to make your life easier.
Either the Rheumy or your GP can referr you to the nearest pain team. They are usually based in a hospital and they will discuss different ways of managing your pain as well as medication. Worth doing but be prepared, it may be a long wait.

With regard to taking as you say "something natural" with your meds it's really best to discuss this with your Rheumy or GP as some natural or herbal therapies can indeed affect your treatment.
Hope this helps with some of your queries. One thing which I've found usefull is to write down questions you have'nt got answers for or are concerned about and bring it with you to your appointments. No question is weird or silly, we all have different concernes and what some folk think of as simple may be a problem for others.
Very best of luck for you.
rita

dorcas

Hello again magic dragon,

Rita has really provided you with great advice ''... I can only echo her wisdom!

You asked where I have arthritis and when it started; I was first diagnosed with PA in 1987 after ignoring what I now know to have been 'flare ups' for several years. I first asked for help when I could no longer straighten one of my arms and had swollen, red and damaged fingers.... even then I was reluctant to accept help/ treatment ':oops:'

I have PA and some OA which now affects (in varying degrees / times it has to be said) wrists, fingers, feet, knees, shoulder, elbows, neck and back and have a few ops to deal with the worst of them!

I find that rheumatology are best placed to answer questions about the condition and treatments and my GP is a great sounding board!

Regarding help at home from social services: you can ask for a community care assessment that will identify what your health needs are and level of support required. provision of services is means tested, so you may find that you have to contribute to the costs of the support package; but that really depends on your income.

Another option is to apply for Disability Living Allowance DLA. You can apply online or CAB would help with the application. (DLA is not included in means test) That could provide you with additional income to pay your friend for her help around the house.

There is also the Independent Living Fund..but I don't know enough about it ':?'...so check with CAB!

........hope that helps! iris x

jenzie06

Hiya
Sorry to hear you've been having trouble. In addition to what everyone else has said have you applied for the Disabled Students Allowance? All you do is fill out a form then have a medical (which is painless - they are trying to help you). They provide equipment such as ergonomic chairs and computers so you study in comfort. They can also provide a note-taker for your lectures (I found it really useful, esp if you are too poorly to make it to lectures). The aim is to make sure you are not disadvantaged in your studies because of your medical condition. Sorry if you already know about it but it was great for me.

Plus, the docs tend to have a plan for your treatment but don't always let on (they never tell me!!). If you're worried ask them what their plan is.

magicdragon

Sorry it has taken so long to reply

I don’t know what to do regarding pain relief I’m on co codamol 30/500 and switch over to tramadol when the pain is too much. I just have a fear that they would say that I’m not in a serious enough amount of pain to warrant it and to wait until I’m on the methotrexate.

I was just curious about injections I know they start you on tablets but I wanted to be fully prepared for everything that may happen.

I asked about anti sickness tablets at the appointment with the nurse and she was ever so nice NOT but basically said that if I want them I have to ask my GP, so I’ve got an appointment for the day I’m due to start as it was the first available non emergency appointment

Again regarding with asking to be referred to another OT the nurse I’m currently dealing with atm is shall I say not very useful.

I came into the appointment slightly late due it was immensely windy, me and my friend had to grab hold of each other for dear life because it was blowing so hard and my balance in these conditions is shot.

I explained that I was very sorry (I’m usually on time) but she got quite angry, pretty much yelling and saying she has other patients and I said I thought it was best to get there in one piece.

Then she asked me of my decision straight away, I said I had some questions I really had to stand my ground and push for answers to begin with and it was only because I had my friend backing me up that she then started to answer them properly.

The main thing that annoys me is she makes them out to be vitamin tablets all great and then make me feel stupid when I question about side effects.

She will then say pretty much none of her patients have them but then later went on to say about a women where it was working well for her arthritis but she’s having major sickness and side effects so constantly contradicting and not putting much faith in what she’s saying

Anyway I eventually got the answers I wanted and she’s going to check on the things she doesn’t know but only cos me and my friend pushed

I’ve got an appointment next Tuesday to confirm the things I asked her that she’s going to check and if I’m ok with it I’m going to start on 7.5mg going up to 15mg but potentially 20mg

I feel really bad asking for a community care assessment and I get DLA hm and lc. I’ve had a friend helping me but its patchy and would just like to find a cleaner I can call on if she can’t but didn’t know if social services had like a registered list of people they know are genuine.

Ive got DSA and they have been excellent with the increase in severity of my condition and I got it anyway as I’m dyslexic (My boyfriend looked over this post for me)

I get a notetaker (regardless if I’m in or not), personal assistant, extra time, non practical alternatives for when I can't do something, Dictaphone, taxis up my hill in bad weather from the bus stop, extra time in exams etc so this is the one place I’m totally covered but I have talked to the uni and if it becomes too much they have said I can drop down to part time with no penalty, I’m doing science so very hard work atm

Thank you so much for your help any more advice and support I could really do with, sorry it’s taken me so long

jenzie06

Sorry to hear the nurse was a complete ****. I came out of my last appt in tears as the registrar was horrid. I was so fed up I wrote to my consultant expressing my disappointment. It made the registrar think about the way his attitude came across. It wasn't a stroppy or angry letter I just told them how disgruntled I was at being dismissed. It was worth it as the consultant apologised.
You have to keep in your mind that you have to work with the hospital as they have your best interests at heart but not to accept rude or useless behaviour. It should be a team effort with you as part of the team.