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pagirl

Hi all

Just discovered this forum & hoping to get some advice & help.

I was diaghnosed with PA in July this year.Last year I had some patches of psorasis come up on my scalp but they did not bother me a lot so thought little of it. In April I had a horrible virus that made me ache all over & then a few days later one of the toes on my left swelled up. I did everything to get it down. Eventually I went to the doctor in sheer frustration as I could not wear loads of my shoes & I had this awful stiffness in my thighs, legs hands & feet.He tested me for gout initialyy but I was pretty certain it was not that & I was of course right.

I then asked for a referral as I have private insurance to a Rheumatologist. He diagnosed PA & injected my toe with steroid as luckily I had suffered no joint damage.

I must tell you right off I do not believe in drugs. I am an ex nurse & know what goes on & believe that doctors are very tunnel visioned about drugs. I have proved that you can beat something without medication as in January I was diagnosed with type 2 diabetes & much against my GPs will I refused all drug therapy & treated myself with alternative therapy, maily supplements & herbal remedies & also cahnging my diet considerably & loosing nearly 3 stone in weight. I am now glucose intolerant & have reverted all my blood glucose levels back to normal.

Of course the Rheumatologist tried to push me onto steroids which I refused beacuse for one thing it would undo all I have done with the diabetes & only give me other problems.

I have since then been working furiously to find a way to improve this PA. Things are moving slowly but with the help of homeopathy I truly believe I will get there. However I still ahve stiffness a lot & I do have at times to resort to taking Ibuprofen 400 mg once a day to be able to get around properly. luckily one dose I can cope with & if I feel I need anyting else I will top up late afternoon with 2 paracetamol.

BUT I have had my middle finger swell up on my left hand. Its all on the left side of me it seems. I feel I have to return for another shot of streroid & I just know he is going to batter me & tell me that I need Metrhotroxate.

Now my experience with this drug is very negative, I have seen my mother who has lupus & a friend become 10 times worse on this drug & I will NOT take it or anything like it. Also through years of nursing I have heard so many Arthritic patients say that they deeply regret shovelling pills down their throats but have been basically told by doctors that there is no alternative. I have been advised by others with RA & OA not to let doctors convince me into drug therapy.

My questions are.

Can you survive by taking the minimal amount of analgesia with this blasted condition ?

Can anyone honestly tell me that the quality of their lives has improved with taking steroids, Methotroxate etc ?

Many thanks

trevorpotts

Hi and welcome to the forum, I have PA and you have my sympathy as it is not something you would wish on anyone. I wish you well in your quest for a drug free treatment. I tried and failed on most drugs over a period of 4 years. At first I was very much against any drugs but as the condition worsened I found that without the diclofenac I could not function and without an effective dmard I was risking serious damage. I have now been on Humira for just about a year now and so far I have not had any serious side effects. The drug started to work immediately and the first week I showed a dramatic improvement. I still have to be very careful how much I do as I still get fatigued very easily but in answer to your question, yes the drugs do work and I would not be without mine.

lindalegs

Hi Pagirl and welcome to the forum,

I've had RA for 22 years and feel that my drugs work for me and my quality of life has definitely improved. I've also known 4 Rheumatologists in my RA life and all have treated me differently, the one before now stopping my Mtx and then discharging me - that was 7 years ago. I then began to feel ill, arthritically, not at first but very gradually, over a 7 year period, crept up on me again and I kept putting up with the increasing stiffness and pain until a major flare-up in February this year. This resulted in me having a hospital stay for 4 nights whilst my RA was got under control again by steroid injection. My new Consultant believes I should never have been discharged and have done myself more damage by battling on alone. I'm now on a low dose of Methotrexate again which is working wonderfully I did increase the dose to 12.5mg a week but my Rheumy decided to drop it to 10mg as I was responding so well.

You have to consider that whilst you've decided to only take analgesics and not have any Dmards you could be damaging your joints long-term - I don't know how old you are or how aggressive your PA is, but this could be extemely important later on in your life. All the Dmard drugs are monitored by regular blood tests and visits to the Consultant.

Personally, I'm happy to be under the guidance of the Rheumatology team as I know they have my best interests at heart and if I'm not happy about anything at all their door is open for me to phone and discuss things. They don't hold a gun to my head forcing me down a road I wouldn't want to go they do leave the decisions to me.

Luv Legs

radiogirl

Hi and welcome to the site, it a great place to be !

In answer to your question, I could not function without my MTX, this time last year I thought my life was over and I would never be able to move again, I am 42 after Christmas and have a new lease of life, I now go the gym 4 times a week (only small excerise's at the mo, but getting there) I have lost 2 and a half stone in weight in the last 4 months, I personally could not do without it, I am on 12.5 mg a week Don't get me wrong I still have my bad days and my down days, but the good far outway the others.

welcome to the site though, I hope you find the answers to your quest

poppy30

Hi there!

Just wanted to share my experience with you.
I've had psoriasis for 15 years and was diagnosed with PA around 3 years ago (although have had the symptoms for about 8 years). I had tried a number of alternative treatments for psoriasis (diet changes, natural remedies etc) and had also used many prescription drugs but with no success. As I was diagnosed with PA several years after the first symptoms began I was so desperate for relief that I went with my rheumy's suggestion of Mtx. Tried this on it's own for 4 months and after no significant improvement asked to come off the drug. My rheumy was supportive but suggested that I give prescribed meds another go and try Mtx combined with Humira. Agreed to give this a go and within one month I had seen significant improvements in my joints and my psoriasis (including the nail damage) was beginning to clear. I used this combination of meds for 2 years without any troublesome side effects and they really improved my quality of life.
Two (long!!) months ago I came off my meds in order to start a family and both my psoriasis and PA have returned with a vengence!! Miss my meds soooo much!!
I'm not saying that taking meds is better than an alternative route but this is what has worked for me!

Good luck with whatever treatment route you decide to take. Really hope that your rheumy works with you rather than trying to force you into taking prescription meds.

Keep us posted on how you get on.

Poppy x

pagirl

Thanks for all your input. Much appreciated.

Firstly I just need to say that the Rheumatologist stressed to me that I had very mild PA although some days it is difficult to believe that :roll: .

I have full movement in wrists, knees, ankles toes despite that toe flaring. It is now absolutely fine & I can now wear my shoes. I can bend down & touch my toes & move from side to side. I have also had various x rays of hips knees etc & there is absolutely no sign of any arthritis at all . That toe has also been rexrayed & it is in remarkably good nick considering how long it was swollen. In fact the comment was made that my joints are remarkably good for my age (54 ). The main prob at the moment is this finger which is a right :!: at times & that I have sore feet when I walk.

Does anyone else have sleep problems ?

poppy30 wrote:

Hi there!

Just wanted to share my experience with you.
I've had psoriasis for 15 years and was diagnosed with PA around 3 years ago (although have had the symptoms for about 8 years). I had tried a number of alternative treatments for psoriasis (diet changes, natural remedies etc) and had also used many prescription drugs but with no success. As I was diagnosed with PA several years after the first symptoms began I was so desperate for relief that I went with my rheumy's suggestion of Mtx. Tried this on it's own for 4 months and after no significant improvement asked to come off the drug. My rheumy was supportive but suggested that I give prescribed meds another go and try Mtx combined with Humira. Agreed to give this a go and within one month I had seen significant improvements in my joints and my psoriasis (including the nail damage) was beginning to clear. I used this combination of meds for 2 years without any troublesome side effects and they really improved my quality of life.
Two (long!!) months ago I came off my meds in order to start a family and both my psoriasis and PA have returned with a vengence!! Miss my meds soooo much!!
I'm not saying that taking meds is better than an alternative route but this is what has worked for me!

Good luck with whatever treatment route you decide to take. Really hope that your rheumy works with you rather than trying to force you into taking prescription meds.

Keep us posted on how you get on.

Poppy x

ktl297

Hi PAGirl,

I also have PA and I have had it for a few years now. I've got a couple of things to let you know about... Firstly PA tends to damage joints less quickly than RA and it shows up less on x-rays etc which is why it's so difficult to diagnose. I think the right sort of exercise helps enormously but fatigue is a massive part of the PA and can make it difficult to do. I'm not surprised you are feeling tired. Pain is tiring in itself and the disease takes up lots of energy as well. I take methotrexate and humira as well as etoricoxib and various painkillers. Making the decision to take the dmards was easy for me - I would have done absolutely anything to stop the pain - but I realise how tough it must be for you. I've done loads of research and sometimes feel I'm better informed than some of the Dr's I see in the clinic (although most of them are fab). My PA affects every joint in my body - my right knee held out for longest but gave up the fight a bit ago. The worst bit is my sacro-iliac joint whic gives me tremendous back pain. Ask me anything if it helps... KT

frogmorton

Hi Pagirl
Just a quick welcome from me!!
Pleased you are here - it is a really great place to be, everyone is great and so supportive.
I can't really advise you on natural vs medication route. I was glad to get my DMARDs only because I have seen the damage done to poeple who are older and those treatments were not available then. I am too scared not to!!!
Hope all goes well for you
Do let us know how you get on - we will be interested.
Toni x