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Date: 03.03.2011
From: Keith

Subject: PsA diagnosed 1yr ago, advice?

Hi, my name's Keith & I'm 39. Was diagnosed a year ago after my middle finger was swollen over a number of months after an accident. By the time they pin-pointed that is was PsA, erosion had already taken place & now I have roughly 60% less use of that finger (i.e. it doesn't bend like it should). Have also had two steroid injections in the joint which has helped taking the swelling down but not affected movement.

I was prescribed Methotraxate in May 2010 but have yet to take it due to my fears over it's general toxicity. Instead I take Extra Strength Cod Liver Oil, Green Lipped Mussel Powder and a product called Arthrit-Eze.

Right now I am fully mobile but have pain (but no visible swelling) in both ankles, (mild pain) in left elbow & shoulder, stiffness/pain in right knee, mild stiffness and pain in my right middle finger & thumb and stiffness in my jaw. Nothing that I can't live with right now,

Basically my Rheumatologist is keen for me to start on Methotraxate but I'm in the process of going private & seeing a new one for a 2nd opinion as the dept. at my local hospital is pretty poor in my opinion (Royal Free, London).

I'm terrified of becoming disabled & not being able to play with my son as he grows up but right now I can live with the joint discomfort whilst not taking the 'toxic' drugs. Am I doing the right thing or is it just going to make things worse in the long run. I know everyone's course with this disease is different & levels of damage vary.

Any info or advice gratefully accepted!

Thanks!
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Date: 03.03.2011
From: davina

Subject: Re: PsA diagnosed 1yr ago, advice?

hi there it is very good that you can deal with the pain you are in but methotrexate is there to stop/slow down the progression of arthritis.

i have been on it since sep 2010 and not been bad with side effects just a bit of bad belly and feeling sick the day after (never been sick tho)

everyone is different regarding drugs but there are different ones you can ask for to start on like plaquenil or salphersalzine (if you look them up you will find out more). all drugs have side effects its just how your body reacts to it

hope this helps, good luck
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Date: 03.03.2011
From: Keith

Subject: Re: PsA diagnosed 1yr ago, advice?

Thanks for the reply Davina.

I understand what methotrexate is supposed to do but no-one seems to be able to tell me how quickly the disease itself will progress 'untreated' in the first place so I'm wary of putting something toxic into my system when right now, I can live easily enough with my current aches & pains.

It's all rather confusing to be honest!
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Date: 03.03.2011
From: Angela

Subject: Re: PsA diagnosed 1yr ago, advice?

H
Hello Keith,I started with RA in oct 2008, and was prescribed sulfasalizine then mtx the same as you, and for all the same reasons as you, I did not want to go the toxic route, so I tried to do it myself the natural way.
I was in so much discomfort and pain, and my blood showed very high inflammation.
I am not sure whether PA shows in your blood,but I do know that constant high inflammation in the blood is not a good thing, and means that the disease is still active.
I tried for a whole year taking natural medicine, and changed my whole lifestyle and diet, and although I felt, and looked heaps better within myself,my blood levels stayed high, thats when I realised I wasn't winning, so I gave in and went on the treatment.
I gradually stopped taking the sulfasalizine, and now only take 6 mtx tablets per week. I have never had any bad reactions, my blood balanced within a couple of months, and the degeneration seems to have really slowed down.
I have decided that I will take this until I have 12 consecutive normal blood results, then I will start to wean off them, and go back to natural stuff,and see what happens.
That kind of cuts out my fear, because I dont see them as permanant, this may sound silly to some,but it helps me accept the situation, and my life is so much happier now.
I watch my blood results like a hawk though, and if there is any little rise above the noraml range for the liver, I cut down my mtx for a week or two, and that normally balances it out.
Some say you shouldnt do that, and stick to what the rhummy says, but its my body,and its my right to do what I feel is best.
Hope this helps
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Date: 03.03.2011
From: dolly

Subject: Re: PsA diagnosed 1yr ago, advice?

hello keith. i've had ra for over 40 yrs. back then there was no good anti-inflammatories like they have today. i strongly suggest you take some kind of anti-inflammatory to stop any damage to your joints. inflamation is what makes the joints deteriorate. so me not taking any anti-inflamatory ended up with alot of deterioration and have had over 30 surgeries which all consist of joint removals, joint replacements and noduals removed. anyone who dont want to take any anti-inflamatories will suffer in the long run. i can type on my computer with only 2 fingers. the others wont straighten out. take care
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Date: 03.03.2011
From: Nicola

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi Keith, I was prescribed mtx in aug ( 3 months after first RA symptoms) and was determined I wouldn't take it, and that I'd gradually get better, and that multiple-vitamins, anti-oxidants and omega3's would get me better. Didn't let a tomato, orange or merlot pass my lips for months and unfortunately it did jack-all so 6 weeks ago I cashed in my mtx prescription and gave in very very reluctantly!
The good news is that i feel fine (RA no better yet but I'm not expecting much for another couple of months) no real side effects, ( not bald or dead yet anyway!!) have had more than my allocated 6units of wine and it hasn't affected my bloods at all, so I'm quietly optimistic.
With me, I've told myself I'm going to take it for a year, then have a break before trying to have another baby. So I know I've got a time-limit, if it makes me much better or worse well, those plans might change. I really feel like I need to have some control over this and not let it take over my life any more than it has.
I'm 32, with a 1 yr old baby and I'm a physio and it totally sucks having this but this forum is great and has been a great help.
Good luck with whatever you decide!
Nicola
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Date: 04.03.2011
From: Keith

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi Nicola,

Can I ask what made you give in to the strong meds? Pain or swelling?

Like I said in my post, apart from my now damaged finger, the other stuff I can happily live with as it seems to come & go in severity, achilles being the main culprits which obviously cause pain when walking. In all other aspects I'd consider myself fit & well, so I'm wary of putting something so potentially toxic into my system when no-one can tell me how bad exactly my disease is going to get. Does the fact that I had 'sausage finger' & subsequent damage mean that my other fingers will also become damaged along with other joints?

I have so many questions!!
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Date: 04.03.2011
From: cookie

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi keith i think most people take the meds to avoid the damage in the future. Whenn i first had my ra they didnt use mxt as a first drug as they do now within 4 months my mobility in my elbows was and still remains about 60% of normal movment. I will never get that back. The problem is if you have a bad flare up you could get perminant damage that is irriversable. Many people fell that preventing such damage in the first place is the key. Many people cope well on the meds and get very few side effects while some need a bit more balance. Its of course personal choice but i for one take mine am waiting assesment for anti tnfs i dont want to look back in 20 years with poor mobility and say " i should have taken them" ! Its a big decision and your right to question but an informed decision is the best way x
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Date: 05.03.2011
From: Tom H

Subject: Re: PsA diagnosed 1yr ago, advice?

Keith, If you've been prescribed MTX then you should take it. I've been on it for nearly 4 months now, I think it's starting to work. Where are you going for your 2nd opinion? I was private at UCH but have now continued on NHS.

Please get in contact if you want any advice or a chat as you're in the same vicinity as me.

Cheers, Tom

I'm 37 btw
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Date: 06.03.2011
From: Keith

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi Tom,

I'm seeing my GP tomorrow to get a private referal & am hoping to go here :

http://www.londonbridgehospital.com/

What was your experience like going private? The rheumatology dept. at the Royal Free is pretty poor, appointments always run over an hour late & it feels like I'm on a conveyor belt, in & out.

Could I ask what symptoms you have & how it's affecting you?
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Date: 06.03.2011
From: Keith

Subject: Re: PsA diagnosed 1yr ago, advice?

Btw Tom, you can get me direct on :

djsuavepromotions@gmail.com

Good to hear from another male of a similar age!
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Date: 07.03.2011
From: jen

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi Keith,
sorry to hear about your diagnosis. it's obviously your choice and these drugs are very scary but the way i look at it - at least you have the choice to stop the drugs if you don't feel well on them. we can't stop having the arthritis! if it were me, and i'm not trying to scare you or anything, but just saying if i'd had arthritis one year and already lost 60% movement in one finger i'd be trying to fight it with everything I had. if it helps i know tons of people on it and no one's had anything more severe than a stomach ache/tiredness from it. most have tolerated it well and it's put the arthritis in remission for a couple. ive been on sulfasalazine and plaquenil and had no side effects from those either so maybe worth asking your doc about those, although i dont think they perscribe plaquenil for PA. good luck!
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Date: 07.03.2011
From: Maz

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi Keith,
I also am sorry you have one of these dreaded arthritic diseases, it isn't pleasant, however I believe you need to read up on what your disease is & all the available treatment paths available to you so that you are well informed before you go & see another doctor.

You are right though there is no cure for arthritis & yes there is a thought that mtx may slow down some of these diseases but the decision is yours to make.

On the other hand have you ever heard of antibiotic therapy (AP), this treatment path is used by many people to control Psa & similar diseases. It is my suggestion that you have a look at the site & get some more information before leaping into something you clearly don't want to do. the site address is www.roadback.org

Good luck,
Maz
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Date: 08.03.2011
From: Keith

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi again,

Jen, believe me I've finally woken up & am ready to fight it & take whatever drugs are necessary. I guess after initial diagnosis I didn't fully appreciate the potential severity of the disease & was perhaps in a little denial, thinking "hey, it's just a finger!". Obviously I have tenderness & aches in other places now too & have done probably too much reading on the internet about what could happen (sometimes too much information is bad I think as every person is different).

Maz, I've read pretty much all my little brain can handle about the disease & the available drug options! As I said, sometimes reading too much just puts the fear in people (myself!). I have an consultation with a new rheumatoid specialist this Thurs so no doubt will be sent for more tests & scans etc. -- hopefully as I'm going private it'll be a swift process.

I have read-up about the antibiotic route, it's extremely interesting & something I will obviously mention to the new rheumatologist when I see him.

Thanks for all the input folks!
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Date: 08.03.2011
From: Nicola

Subject: Re: PsA diagnosed 1yr ago, advice?

Keith
Sorry for the slow reply, every time I press send, the computer chews up my words!
I started mtx as I wasn't getting better on sulphasalazine and plaquenil, finger stiffness and wrist pain are my main problems, which basically makes everything difficult. I've never had massive swelling but a lot of pain at my tendon insertions, and a lot of sternum pain - which is made worse by carrying my baby.
It's week 7 now, and still no improvement but I'm no worse..... And most importantly I feel fine, have had no nasty
side effects and I can still enjoy a sav blanc as much as I used to!
Good luck with the rheumatologist!
Nic
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Date: 09.03.2011
From: Tom H

Subject: Re: PsA diagnosed 1yr ago, advice?

Hi Keith,

I've had 2 ops at London Bridge and loads of physio (unrelated football injury) and found them to be really good.

I was private whilst finding out what was wrong with me and for an arthroscopy, knee drains etc. was mainly in Princess Grace then and the one near Lords.

Once was diagnosed I was told it would be easier to go through the NHS and to be honest it's been fine in terms of appointments, blood tests prescriptions, personal contact etc.

My MAIN symptom has been my knee constantly swelling up (had it drained 9 times last year) and problems related to that. I also have alot of pain in my hips and neck, bit in the fingers. I also have slipped disc in back and limited use of right arm due to earlier ops i talked about.

I hope I have answered your question, I'll e-mail you anyway so you have my address.

Cheers, Tom
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