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patsylakebears Patsy Lake Bears
Sydney
Posts: 3,442

Thinking that I could get back into the bears again. I have tried but as soon as I start using my arms and hands it all flares up again. This week has been dreadful with the pain again. I am taking prednisone 10 mgs just now and an anti inflammatory Prexiage 200mg which I really don't like taking. The specialist has prescribed Methotrexate (sp) reading up on this it is very scary, not that the prednisone is much better. Does anyone here take the Methotrexate and if so can you please tell me what your feelings are on taking it. I am quiet depressed about it all and wonder if I will ever get back into my bears.

doodlebears Doodlebears
UK
Posts: 7,414

doodlebears Celebration Ambassador

Dear Patsy, I do hope that you can get your pain under control soon. I know it's hard not being able to make your bears right now but you must take care of your health, it is sooo important.
As Ellen said

Do other things for the moment that you really enjoy, so you will not feel depressed. Make your life as fun as possible, even if you can not make bears at the moment.

When you do feel that you are able to try and sew again just do a very small amount and then put it down. Pace yourself and even if it seems to take forever you will have another wonderful little bear at the end.
Take care my friend! Sorry to hear that you are feeling depressed about it. Chin up!

Hugs Jane.  bear_flower  bear_flower  bear_flower  bear_flower  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:

Jellybelly Bears Jellybelly Bears
Australia
Posts: 4,066

Patsy a million apologies for not getting back to your email.  I really haven't been well but today I've picked up enough to have a quick look here and I saw your note...I feel so bad...sorry sorry sorry!!  I just wanted to write so much to you and I wanted to have full concentration for medical stuff,  I really want to help so I will try and I hope it all comes out okay!  I almost have an eighth of a brain today, so here goes  bear_tongue

so....I'm definitely the girl to ask about all this stuff.  I'm been on MTX for nearly 8 yrs (and good job on spelling btw bear_happy  MTX is an immune supressor, by inhibiting immune activity it stops your immune system attacking your joints.  Please remind me what your disease is called?  I'm sure it was poly somthing?

Anyway, let me start at the beginning...there are several groups of medicines they put you on when you are diagnosed with an immune arthritis....firstly, non steroidal anti inflam....like your prexiage.  this is the least aggressive medicine and if this works, wonderful.  You've gotten off lightly bear_original  it obvisously hasn't for you so your doctor has put you on prednisolone.  it is a much stronger?  (Dilu or other medical professionals please step in if I'm on the wrong track!) anti inflam and is a wonder drug for decreasing inflammation and swelling.  but you can't stay on it for too long...and has problems associated with it.  I've also been on that for a long time and have a love/hate relationship with it.  One bit of advice to offer is when you do come off it, reduce ever so slowly!!

next step up is the disease modifiers like mtx, sulphursalazine which was my first before mtx, (I wonder why he hasn't began with that as it is isn't as powerful?)...another is plaquinel.  when I began MTX I was really scared too...now it seems like nothing and if it works for you it really does help and is worth any side effects.  they are usually few and easy enough to manage.  the worst for  me was that it made me feel really illl...it is chemo in a low dose after all, so the nausea and all that.  i take it by injection and if you can do this do it!!!!  it bypasses all that nausea and I wish I knew about taking it this way many years ago.  What dose is he wanting you to take?

There are a whole heap of meds in this group of drugs so if the mtx doesn't work, others are out there...basically, if the side effects are too bad, there are other treatments...they all have side effects but you'll find that some things you can cope with better than others.  another thing to remember is that everything has side effects...the benefits far outweigh tho, and if they don't, you are in charge, get your doctor to change and keep trying until you are happy and comfortable.  thats what i've learnt as i've gotten older (ripe old 30 now hehe)  the other thing is to make sure you keep in contact with your doctor...ask lots of questions and google everything!  Join chat groups....sufferers know way more than the doctors (no disrespect intended)
The other thing that may make you feel better is to know that they will monitor your bloods and everything closely and take it all very seriously when you use medicines like this, so anything really bad can be quickly corrected.  the good thing about mtx is that if something does go wrong, stopping it will reverse the effects.  oh, there is also a med called leucovorin.  vitally important!!!  its an antidote to mtx.  so you take your mtx one day, leuc the next and side effects disapear, whoopie!  Also when without this for too many years.  cost $10 a tablet so doctors didn't put me on it!  don't they know that we will pay anything to feel better!!!!!!

anyway....this is the beginning of the medicines, basically what you've been introduced to.  I've been on two meds from the next step up....the biologicals or tnf inhibitors.  they have only been introduced into australia recently and still need govt approval.  i'm currently waiting on approval for my third attempt.   I've been approved twice so am not worried, but making the right choice is hard...I was allergic to one...the one I'm on has stopped working i think, so i have a choice of adding another to all the other meds (they usually add meds...you don't stop the mtx to begin a biological for instance...I'm on a lot of things, including mtx still, and they all work together and help each other work) or taking the biological I'm on away and replacing it with another that needs to be infused for 3 hours....scared about being unfused, even tho I take many injections already, 10 diabetes shots a day, 3 immune supressors a fortnight, this is an infusion!  nervous!! but, I can't be in bed all the time either and sometimes it comes down to it being very black and white and you can't think too much.  the choices are so hard Patsy.  I can so sympathise with you coz although I'm 10 yrs ahead of you, I'm going through the same med choices and being scared right now.   

take care okay....and I will try and get back sooner for any updates....please ask me anything...i will get back to you....eventuallly!!

love sarah

PS You will get back to your bears!  Finding the right medicine will get you there.  Nowadays they can do so much, all it is is finding the right combo of meds and experimenting.  Chin up, but remember, its normal to feel depressed and sometimes you have to go through those feelings to move on and cope...it all seems so overwhelming at the start and at times throughout, but you will get there...you will have good times again bear_original xx

chris009av Real Deal Bears
Posts: 2,234

I do hope you get some relief soon Patsy.  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:

Tammy Beckoning Bears
Nova Scotia
Posts: 3,739
Website

Take Care Patsy.   I hope your doctors can get your pain sorted out soon so you can make bears.

Lynn Wisconsin
Posts: 834

I hope you are feeling better soon Patsy.  Sending you prayers and hugs.

Lynn

Aleta - The Silly Bear The Silly Bear
Portland, Oregon
Posts: 3,119
Website

Here I was sitting and feeling terribly miserable because I have an awful cold.  Then I read Sarah's post and suddenly I don't feel nearly so miserable.  I have a cold....it's not a disease....get over myself already.  Thank you ladies, for putting me back on track.  bear_original  bear_original

I can't even imagine what you gals go through on a daily basis.  So much pain.  So many medicines.   bear_sad

Thinking of you with warmest, gentle bear hugs,  :hug:
Aleta

lemmonbears Lemmon Bears
Oregon Coast
Posts: 303

Hi Patsy,
Hope you are feeling better soon!
There is hope, I take Methotrexate too.  I do well with it, it does make me nauseous, a little.  I do the shots, like Sarah, it can be a little hard on the stomach. I do my weekly shot in the evening, then go to bed and most of the naseua I sleep thru, although sometimes I feel a little yucky in the morning, other than that okay.  I really like being able to move, so it's an okay trade off.  Any of the meds make my tummy kinda touchy.  I have RA, but the Dr is now wondering about lupus...I said no thank you, I'll keep the RA.... Anyway, I have to have blood tests to check liver function and I am slightly anemic but that has always been the case.  I was also advised to take folic acid.  I also take prednisone, I try and taper off and go off it when I can. Just study up, I really like the magazine the arthritis foundation puts out, it has alot of info on new meds and managing your condition.  It's called Arthritis Today.

Hang in there, in the 10 years since I was diagnosed I've tried many of the meds.  You just have to work with your Dr. to find the right one for you. My Dr is reluctant to put me on some of the new ones yet as they haven't been around long enough.  He said they have been using Methotrexate for years and if it's working why change.  Also the new ones can be very expensive, the shot form of Metho isn't as expensive, the pills are more so.

I hope this helps a little.  If you have any other questions, don't hesitate to ask.  I don't talking about my experiences with these meds etc.
:hug:  :hug:  :hug:  bear_original
Joan

lapousmor Sophie Z'Ours
Sarthe, France
Posts: 2,770

Oh, Patsy, honey! How sad!!
I feel so helpless.

All I can do is send you lots and lots of hugs and cross my fingers for your pain to disappear and so you can go back to teddy bear making.

:hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub  bear_wub

Beary hugs,
Sophie.

Marlys Waggle Bears
So Cal Desert
Posts: 4,089

Patsy, I'm so sorry to hear you are suffering, too. Aleta is right, I often feel like I have aches and pains, but hearing about others really puts things in perspective for you. God Bless you; I'll keep you in my thoughts and prayers, too. bear_flower

SueAnn Past Time Bears
Double Oak, Texas
Posts: 21,683

SueAnn Help Advisor, Banner Sponsor

Hope you find some relief SOON, Patsy.  Chronic pain is not fun, especially when it keeps you from working on your beloved bears.  Wishing you comfort and healing.

bubbles Bearz by Ilze
Canberra
Posts: 391

You're in my prayers!  I hope you do get some relief soon!  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:

Jodi Moisan Storytime Bears
Posts: 1,122

:hug:  :hug:  :hug:  :hug:  :hug:
I am so sorry you are going thru this.
:hug:  :hug:  :hug:  :hug:  :hug:

shantell Apple Dumpling Designs
Willamette Valley Oregon
Posts: 3,128

sufferers know way more than the doctors (no disrespect intended)

AMEN!!!

And on a very RARE occassion you actually do find a doctor who although they don't suffer...they so understand and can be sympathetic.  Okay...off my soapbox!!! 

So sorry you are feeling so down Patsy.  Chronic pain is NO fun.  Take things one day at a time.  Take advice from those who suffer with you, like Sarah....you will learn more from her and those who share in your pain than anyone else. 

Big gentle hugs!!!   :hug:   :hug:   :hug:

sarahjane Brisbane
Posts: 2,951

Patsy I hope you will find relief soon!!  :hug:  :hug:  :hug:  :hug:  :hug:  :hug:

Carolyn Green Draffin Bears
Auckland New Zealand
Posts: 5,354
Website

Dear Patsy,

So very sorry to hear of your pain.
I am really hoping and praying that the Doctors can sort out your pain so you can get back to making more of your beautiful bears.
Wishing you healing powers.

Hugs
Carolyn
:hug:  bear_flower  :hug:

valewoodbears Valewood Bears
Yorkshire
Posts: 6,537
Website

So very sorry for you Patsy, hope you get this under control a little, it must be so frustrating for you not to be able to do the things you love  :hug:  :hug:

Pauline

patsylakebears Patsy Lake Bears
Sydney
Posts: 3,442

Thank you all for you lovely support

thumperantiques Newcastle, Ontario
Posts: 5,643

Patsy,
     I'm trying to catch up on the posts since I've been doing lots of babysitting.  I'm really sorry to hear that your problems have flared up again - I hope you find some relief soon. 
     I wanted to share something I've stumbled across, while finding some relief for our cat.  His back legs are weak due to diabetes.  I read about Methyl B12 and its uses for the type of neuropathy he has, but they are doing a lot of research with it for MS, ALS and have even had success with treating rats with a type of muscular dystrophy.  I have been using it for my cat and in two days, he is MUCH better.  Anyway, Methyl B12 is the only type of B12 that crosses the blood/brain barrier.  When I asked for it at the health food store, the owner was touting it's value and when I said I was buying if for my cat, she said I should take it too, so I have started to take it as a supplement as well. 
     Patsy, I don't know if if would be of any help to you are not, but it can't hurt.  The full name is Methylcobalamin but if you ask for Methyl B12 at the health food store you should be able to find it easily.  I'm pasting an excert from one of the sites I visited.  Google it and check it out yourself.  Hope it might be of some use to you.

"Further research shows that methylcobalamin, the active form of B12, has the unique ability to provoke the regeneration of nerves without adverse side effects. This is because B12 facilitates methylation, the process that creates and maintains nerves and brain chemicals. Research shows that a lack of methylcobalamin causes degeneration of the brain, spinal cord, and nerves. This process, known as demyelination, occurs in other neurological diseases such as multiple sclerosis, Lou Gehrig’s disease and chronic inflammatory demyelinating polyneuropathy. A double-blind, controlled study found that methylcobalamin improved muscle response after only one month of treatment.

                                     Big bear hugs,

                                     Brenda

Jodi Falk Bears by Jodi
Gahanna , Ohio USA
Posts: 3,463

Lifting prayers for a healing for you !! In JESUS name !!!

Gijzette Elfin Bears
Mount Dora FL
Posts: 1,507
Website

Hi Patsy,

I'm sorry to hear you are in so much pain. Hopefully the MTX will help. My cousin's husband has MS and has taken MTX for two years. It has been the only thing that has helped the pain. He also uses the injections as he couldn't stand the nausea.

Sending hugs and prayers that you find some relief and can get back to making your wonderful bears.

Hugs,

Kathleen Pa
Posts: 626

Patsy, Sorry to hear you're not feeling well, hope they find the right meds that work for you.  Keep your chin up!  I'm sure you'll be back to bear making soon. :hug:

Kathleen

Stellajella Wien
Posts: 1,399

Patsy, I´m so sorry, I had no idea, that you had such bad problems  bear_sad
I hope that you can find a cure for it and that you can get back to making teddies and other beautiful things again!!!
:hug:  :hug:  :hug:

Gaby bear_flower

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