Hya, Im Starting a new Job just a week before first RA consultation. What frequency of appointment should I expect initially?

[Custard]

I've told the new contract about my 6th june appointment, but im worried that I might not be as available as I need to be for the duration of the job (its only a 3month contract). How common Is it to have lots of appointments at first? What should I expect?

[Hidden]

wecome new blogger. got a blog on some good reading stuff.. called learn more about ra..

Think each heath authority varies.. after intial consultant appoint you can expect another appoint with nurse/ consultant six months time or sooner if lucky say 3 months.. six in my health area.. treatment?.. any idea what treatment? most treatments require regular monitoring weekly. fortnightly or monthly depending on which treatment you have and were you are .in its treatment regime.

Example methotrexte starts at fornightly blood tests moving to monthly blood tests when more stable .. blood tests can be performed at your gp or your local hospital depending on what time and location is convenient for you.

Also are you requiring appoints with physio/ podiatry/ occupational therapy these may have to be factored in also.

[Custard]

Hey Summer,

Thanks im sitting here in a bit of a tiss.... Dont know what I should expect regards to treatment, how bad I am considered or whether they will begin medication that day or not. I was diagnosed by my GP and June 6th will be my first Rhemy appointment ever.

Im feeling a bit concerned as the Job is in another city so I'd have to either transfer treatment (which may be too disruptive) or travel back to london for treatment. I guess I just needed to get some info so I can work out the logistics

To top it off a different hospital has just come through with an earlier appointment date!! Its just a week earlier, but the same day I start my new contract. I may post another question soon about which clinic is better St Guy's or St Georges clinic..!!

joy

[Hidden in reply to Custard]

Hi, I would certainly check out both hospitals as they can vary so much, that's something I've noticed on here. I seem to have a great hospital in the West Midlands compared to others. Not all hospital offer the same as regards treatment for your RA. Some give you help line numbers, like mine, where you can contact them in an emergency but others don't you have to refer back to your GP. So just a thought to check them out before accepting appointment.

Good luck in whatever you decide.

Mandy xx

[Custard in reply to Hidden]

Thanks Mandy,

I've emailed arthritiscare helpdesk to ask them for advice about which may be the better rated clinic in terms of RA patient care and available RA facilites.

Hopefully someone will get back to me soon as I dont really know how else to find out that kind of information in the few days I have to make a decision.

I didnt post the question here in the end as I wasnt sure that kind of query on a public blog was ok with the Mods.

Joyx

[Hidden in reply to Custard]

For RA the NRAS Helpline are the people to ask. They are specific to RA whereas Arthritis Care tend to be very general.

[Custard in reply to Hidden]

Hey Lyn,

Thanks, I try to keep my options open so have asked just about everyone LOL! Unfortunately noone is allowed/able/willing to give that kind of RA specific hospital comparison infomation yet apparently.

Mandy sent me a link to NHS choices which was really helpful, it didnt log the RA specific info that I needed but for general waiting times etc it is indeed fab.

Chatsi gave a glowing review of St Georges hospital and the care she recieves from the team there.

I love that this site exists, heaven only knows what state I'd be in without you guy's.

Jx

[cathie]

Oh Joy good luck with your treatment. The more info you have the better really. And I hope you cope with the new contract + the treatment. My experience does suggest that the less stress you have the better. I worked on short term research contracts too and it was quite a struggle.

[Custard in reply to cathie]

Thanks so much Cathie!

I really appreciate what you've written. Cant say im not concerned or havent already thought about the impact of treatment + new contract especially with the relocation also required. but, beggars cant be choosers so I will just have to see how it goes and pray for the best.

(zero to minimal side effects, reasonable workload)

[Hidden]

In my experience, once they have decided on treatment, you will have to see the nurse (this will depend on the list!). Then once on treatment you will have the regular blood tests, once fortnightly, then once monthly. But if I know anything about RA nothing is predictable. It's not that straight forward. Are you having any symptoms are you able to work ok now? Are you having a flare,taking tablets now? The standard for treatment at the moment seems to be straght onto Methotrexate sometimes on its own sometimes with another DMARD, depending on severity of disease. These have side affects which can be worse than the disease! They take time to take effect (months) which might again affect your ability to work if the disease is progressing or if you are flaring. I would think your priority at this time to be your health... but that is just my opinion. Good luck, let us know how you get on and take care Julie xx

[Custard in reply to Hidden]

Hey Julie,

Thanks for all the info, very useful Im currently on Prednisolone as my fingers, toes, shoulders and jaw all decided to throw me a 'stiff & swollen pain party' since April. The meds have helped tons so now I just have mild aches in my toes and fingers & morning stiffness in my Jaw (shoulders are back to normal) YAY!.

I know you didnt mean the priority comment to come across in a harsh way but it was a tad blunt!! Of course my priority is my health, but Iike everyone here there are bills to pay and unlike some of the regular posters I dont have support or family to rely on so I have to work.

[Hidden in reply to Custard]

Ah yes... point taken... it is rather blunt... and I'm sorry, I didn't mean it to... I just thought well like I wasn't sure I read your profile and it sounded like you could sort of pick and choose your contracts... probably digging a hole for myself here... Don't know why,I made a wrong assumption.. blushing here.... oh poo... apologies, I'm nice really :-}

Any road up, going by what you say, if your symptoms have calmed down, it could be just a question of monitoring you now. what was the diagnosis before then? to put you on the prednisolone?

[Custard in reply to Hidden]

Bless,

No worries lovely I know your nice!

I was put on the steriods as I seemed to be developing a new area of pain and stiffness every week. As my Rhemy appointment was still 4wks away, guess the idea was to make me comfortable during the wait.

Im actually supposed to be tapering off now so I get stiff again for the appointment.

Really looking forward to that.... honest I am!! (not)

[cathie]

Just another go - contract working, depending on the specific details can give you some leeway. Such as being able to work from home? If I'd been able, I'd have done what Julie says - focus on my health at first. But only you will know how much you need to keep in continuous employment, how understanding are your employers/ line managers, whether it would be possible to suspend your work or work part time for a little while until everything is sorted out.

I think that if I were in your shoes I might check out who might be my allies in t his new workplace. Are Human Resources helpful, is there a union branch who would support you, what's your line manager like? I found an ally in the administrator in the academic department where I was working. She worked behind the scenes to ensure that I was OK. Others were less helpful. I was dropped from one project which would have given me continuous employment because I couldnt travel to California immediately after the New Year to return a day before teaching started! Noone actually said anything but It was quite clear. Good luck anyway. I hope you've a good, understanding consultant, helpful RA nurse etc.

Goo

[Custard in reply to cathie]

Aww.. cheers love,

I work in the animation and games industry as a project manager. So my workload consists of me scheduling and tracking progress. Working from home isnt an option as I have to be in the studio looking after the various teams. As long as my PC desk and chair is set up ok I believe I will be alright. Dont know anyone at the new place but I dont forsee it being highly pressured or mega mega busy.

My RA initially reared its head in Dec near the end of a different 2yr project. At the time I was playtesting (playing the game and loging issues). I realise now that I can never playtest again, as it was hell on my hands which were flaring pretty badly due to me having to play the game for 7hrs a day 5 days a week!!

My commute to work played havoc with my feet, as the new job is out of London I can cycle into work in 10mins and I've already let them know I wont be playtesting at any point. There is always some leeway to be found and I wont need to be jetting off anywhere, not for this project anyway.

Joyxx

[Hidden in reply to Custard]

Hi Joy

You have my sons ideal job!

Im going for all the adjustments I can too. Hope all goes well with your app and also ne work setting

fiona x

[Custard in reply to Hidden]

It is fun, I love my work!! (probably a bit too much LOL)

Thanks for kind wishes Fiona.

Joyxx

[Hidden]

Hi

If you click on the 'Hospitals' button at the top of the page - then 'Find My Hospital' you should be able to get some feedback on the 2 hospitals you're interested in.

Re appts - you can probably arrange your blood monitoring at a gp surgery initially - or your own gp if they have an evening or saturday morning appt. I've found that explaining about work situation helps and folks are generally helpful Can't imagine that you'd have more than one additional consultant appt in that 3 month window.

Good luck,

Cece x

[Custard in reply to Hidden]

Thanks Cece!

I'd checked the hospital survey a while ago when I got more first appointment but needed more info when the second option came through. Chatsi and I have been messaging today and she had some excellent advice and review of her hospital.

Thats a really good point about the GP doing the blood monitoring, I know a GP in the city I will be working in. so I will check with him if its ok for him to do my bloodtests over my contract period.

You guy's rock!

I love this site.

Joyx

[Gina_K]

Hi Custard,

Bit late to this question as usual. My son is an animation student in 4th year now! The one thing I would say to you, without knowing the extent of your RA is, it sounds like you are at the very beginning of treatment, you are on pred and this masks the true extent of pain, which is great relief and truly is a miracle pill in the short term. I think how often you see doc, nurse etc depends on how affected you are by the RA, which is difficult to tell as you are on steroids now, so they will probably go by your bloods ie. ESR & CRP, Every 3 months, would be ususal when starting methotrex or any combination DMards. YOU may want to see someone sooner if you have a problem.

I had no side effects from meds and if you are not suffering from tiredness, thats great, as this is one of the biggest issues for people working with RA (or not). Most people need to re adjust there lifestyle over a period of time, but hey if you are feeling ok, cross bridges if you come to them. Be aware, and I hope this not true for you, that in the early days things can change rapidly. I went from moving joint pains to unable to walk in 8 weeks

Pacing is a big word with us here and it is one thing you will have to think about Can I pace myself & manage this job for at least three months?

I hope this is helpful , positive & realistic.

Best of Luck.

[Custard in reply to Gina_K]

Hey Gina!

I hear you, and thanks. I have had to totally dismiss 2 other contracts in the last few weeks as I knew I wouldnt have the energy to complete them nor do a good job. Also im aware there are things I just wont be able to do for a while, or ever. (like 10 hr days)

This short contract in a small city felt like the ideal option for me right now (my only wish is to have start meds earlier, primarily to get a sense of my new 'reality')

I appreciate everyones concern however, and have the same concerns myself but the proof of the pudding is in the tasting so I'll trust in God to give me what I need to get through.

Not sure about RA fatigue... as I began to feel better as soon as starting taking iron tablets in January. I've never been a good sleeper but do feel 100times clearer headed and energetic now. (i've had amonth of work too )

xx

Yay for animation!! (hope your boy is doing CG? He must have the 2D classical basics as well though) that way the world will be his oyster he can work in Games, Features, Series work or VFX..

Hope your well

Joy xoxo

[Gina_K]

Hi again Joy, yep I think he is doing all that! He is off to Annecy in France on 3/6 to animation festival, To be honest with you he is animating since he was 2. OOOOhhhh I hope the world is his Oyster! He said a while ago he might just make small animations for festivals I hope he was joking!!! LOL. College has cost me a fortune, but as he is brilliantly talented, so much worth it. He has a co op called Inklude and they doing some wall animation at Summer Solstice in Cork. Will check he has all that covered ! They have some wild ideas so different!

[helixhelix]

Hi Joy,

Late to this thread, but I ended up seeing consultant about every three weeks for first few months after diagnosis as well as the blood test appointments and the nurse (for RA education?!). Basically it took (and is still taking) a while for me to stabilise and lovely doc has attitude that she wants to keep close eye on new patients until they're stable. I think it very much depends on the doc, but I found it a great relief to have the time with her so even tho' it may be difficult with new contract you might find it worth effort. The first couple of months were a real emotional roller-coaster as it all started to sink in so do give yourself enough time & space for that too. I found that when I came off steroids I did struggle, and energy plummeted. Sounds as if you might be a tiny bit of a control freak (and I mean that in the nicest way - takes one to know one) so adapting to RA could be v v hard for you.

Generally I think London teaching hospitals are pretty good, but most important thing in my opinion is whether you can build relationship with consultant. From some of the posts some people are unlucky enough to have ones that are rather uncommunicative. Anyway, good luck, Polly

[Custard in reply to helixhelix]

Hey Polly!

Your consultant sounds nice. I have a clearer idea now what to expect, which makes me feel more comfortable.

Hmmm.. reducing the steriods isnt going to be fun, and how I respond or not to the meds is still unanswerable at this point so i'll take it one day at a time.

Im so gratefull for everyones responses, the more I understand the easier it is for me to accept and assimilate what is happening to me. If that makes me a bit of a control freak then I hold my hand up.... Guilty!

I'll let everyone know how it goes!

Cheers love

Jx