Refusing To Take Steroids

[Jeanabelle60]

Not so long ago I wrote a post about being prescribed steroids and my fear of them.

I'll explain how I got to this point......I was diagnosed 4 years ago and after about 18 months of using the usual Salfa and MTX I was taken off them due to complications with my liver. After another 9 months waiting for funding I was put on Humira, then I was put on Enbrel, then Tocilimab and then finally Abatacept. All of theses drugs, with the exception of Tocilimub, worked either very, very well to moderate relief. I am sero negative too so that can make a difference to the drugs I can get/take.

So after all my trials and tribulations I now have no where else to turn. My lovely Dr David told me that there was nothing, at present, available for me to take except the dreaded steroids!!

My reluctance to take these drugs is two folded. I have had mental health difficulties, which are medicated and worked very well indeed for quite a few years now, steroids are NOT recommended for people with these kind of conditions. My second reason for not wanting to take them is because of the huge problem of weight gain. ow I want to say that I have struggled with my weight all my life and have yoyo'd up and down since I was a teenager. This has caused me huge problems with my self esteem and often lead to me becoming almost house bound. I'm not a vain woman and don't spend hours looking at myself in the mirror. I don't wear much make-up, in fact very little, I don't need to as I'm bless with very good skin and haven't shown my age ever. I recall being able to get on the bus for free when in fact I was a married woman with a child......its a genetic thing for which I am very greatful I have to say.

I'm waffeling on a bit but I hope I've explained myself clearly so that you can appreciate my reluctance to take steroids. Anyhow, I say my darlin Rheumy nurse, Bronagh, yesterday and she was great. She tried, like many, many other people in my lifetime, to instill into me that I'm not overweight and putting on half a stone or so won't make much difference to me......I lover her to bits but I just don't 'see' myself the way other do, I wish I did, life could have been so much easier for me if I had.

Bronagh told me that she couldn't make me take them but that i had to be aware that by not taking them I could be allowing skeletal damage. She said that if I do take a bad flare that I was to contact her right away and she would give me a steroid injection.

I'm writing this and I'm thinking of a neighbour of mine now deceased, who smoked all her life. She became very ill and had the very best of treatment and surgery to preserve her life. Within days of being released from hospital she was smoking again and died with in a few months. At the time I railed against this unfortunate woman for being so selfish and the waste of all the time, money and effort and how it should have been given to someone who 'really wanted to live'! Am I doing the same thing? God I hope I'm not being seen in the same vain.

I left Bronagh with the promise that when I get to the point where I can't take the pain and my pain relief is no longer working that I would take the dreaded steroids.......a compromise I thinkk and she seemed happy enough with that..........what do you think? Jean.

Flim, I really did go on a bit didn't I??????????????

[mary53]

It sounds like you have thought it through very carefully and that you have a plan. So not going on but more like thinking out loud. ...well typing your thoughts. We all have to what we are comfortable with and it sounds like you are. Hoping you don't need to contact your nurse.

[Jeanabelle60 in reply to mary53]

Thanks Mary......I'm Irish and do have 'the gift of the gab'.........I much prefer your "thinking out loud....while typing my thoughts". Hope your well and thanks for the response. XX

[Azabat]

I think you made a sensible compromise. I understand the weight issue (I'll be taking extra walks while I'm on this taper) since I've always struggled with my weight as well. That in itself is a complex set of issues, and when you add mental health and other meds into the mix, I'd be reluctant, too. I've only had my diagnosis for 6 months, and this is my second taper. I worry, but I take it, because that's what it takes for me to function right now. I don't think it's selfish to take in the whole picture of your health, and I don't see it as self-sabotage.

I also think it's a fine line to walk between managing your disease and simply surviving it. I sometimes think that as a society we value quantity of life over quality. This being your chosen compromise, please make sure you don't allow the quality of your life to deteriorate so much that you can't enjoy the quantity. I don't know that I'm being helpful, but I truly do understand complex care issues, and you make perfectly good sense to me. xx

-Bat

[Jeanabelle60 in reply to Azabat]

Hello Bat, you make a fine point there about quality/quantity.....I'll be giving this lots of thought and I'm sure other will be too. I have this dreaded disease long enough now to know how 'my body' works. I know too that I am capable of what they call here in Ireland as 'thowling' pain. In the beginning I , like others i'm sure, thought that I was going through the worst pain of my life. I was, at that time but not now. i know I'm a stronger woman than I was then. I know that my pain barrier has risen. For these resons, as well as others, I'm going to stickk to my guns and continue as long as I can without the Pred! I will know when the time is right.

Having said that many of the replies I have had have renforced my decision to wait aand see what happens, it may not be for everyone but for me I think I'm right.

Thanks for your great reply. I hope you are well and remain so. Jean.

[dazzlebandit]

I was on the steroid roller coaster for 16 months and have been off of them for three weeks. I will say that I am not off of them gracefully either! I miss the normal feeling of the energy that seems to be totally depleted in people like us! I am glad to be off of them for the weight gain because like you, I have struggled my whole life with it! I did gain 12 pounds but the water retention has come off tremendously! I do not blame you for not wanting to take them but I would go right back on them in an instant to not have to bear that pain again! If you are being vain, then I think the rest of us would be as well! I is a thought that runs through all of our minds at some point! You do have to, at some point, do what you have to do! Take care of you!! You are making a conscientious decision and doing a great jog of it!

[Jeanabelle60 in reply to dazzlebandit]

Awh, Dazzel, thanks for your reply. I think I just wanted reassurance that I wasn't wasting my teams efforts to give me the best of care, which they do give me in abundance or being a vain, dizzy diva!! Your a doll. XX

[Ali_H]

Hi Jean,

As someone with long term, pre RA mental health issues I can understand your reluctance to go down the steroid route especially as weight gain can so easily knock our self-image/esteem in the negative direction.

Some of the weight gain issue can be countered by eating super healthy but I find that hard as carb loading is how I instinctively counter my depression but a book that I bought about 7 years ago really helped me to understand my relationship with food and mood is a book called Super Foods To Boost Your Mood - food that fight depression by Alexandra Massey. It explains the emotional chemicals in our bodies, has a chapter on emotional eating and a lot of other info I found helpful like food containing tryptophan help with serotonin uptake (Turkey, seafood, humour and others) thus easing depression.

Maybe by altering your diet, if possible, will enable you to have effective results with a lower does of steroids. Have you been offered or attended a pain management clinic as that may also help?

I hope that was of some use to you

Good luck

Ali

[Jeanabelle60 in reply to Ali_H]

Hello Ali, thanks for getting back to me. Thats very interesting info about the book, I will be looking for it in Amazon very soon. I'm vegatarian/vegan sort of. I don't eat any meat at all nor fish or eggs. I eat very little dairy but I do like 'real' butter, the odd yogurt maybe oh and rice pudding too. You know the kind with fruit in it. I do eat Quorn, rice, pasta, veggies of every kind and fresh fruit 2/3 times a day. I also try to take an hours walk with my dogs. I don't always manage everyday but certainly 3/4 times a week. My biggest problem is an insatiable sweet tooth. I have managed to keep it to one day a week where I allow myself to have a bit of a party! It is only once a week though....Saturday night!!!!!

Thanks again for your reply. Its even better when its from someone who know what depression can be like. People find names for it, their depression. I haven't a name but when asked to discribe it I say it is like a black plastic bag descending over my head until everything is black, without colour.

The comedian Spike Milligan said it felt like he didn't fit in his own skin....I know what he meant.

All the best Ali and thanks again. Jean.

[Ali_H]

Hi Jean,

Glad to be of some support!

Have you looked at steering your diet to an 'anti inflammatory' one? Avoiding obviously refined sugars (except on Saturday Sweet parties ), the nightshade plant foods (potatoes, tomatoes, paprika, bell peppers, chilli peppers, goji berries, aubergines and a few others, mainly herbs, I can't recall) .... these can encourage heat and inflammation in the body - I've cut down on them but haven't gone for an elimination diet on anything as I can't be bothered to spend my limited energy & emotional resources on being fanatical about it!

Apparently eating dark chocolate and apple together increases the antioxidant effects - Apple fondue anyone?

Carrot, Apple, pear and mango are supposed to work together to reduce body heat - sling a bit of fresh ginger in there with some cinnamon will also help -darn I'm off to make a smoothie in a minute!

Parsley is supposed to be helpful but I can't recall why and if you really want to try and ease things a glass of celery juice a day for a week should do it.... I've not tried that one but am saving it for when my RA is really, really bad and it'll be a last resort as the thought of drinking celery does not appeal at all - maybe with the ginger and cinnamon it wouldn't be soooo bad Would dropping a large scoop of ice cream in it undermine the cleansing process I wonder!!!

Turmeric is a good anti inflammatory (I take one capsule with each meal)

I find wheat and yeast a poor combination (it agrivates my sister's irritable bowel but she can eat unleven breads such as pitta - she was the one who put me on to exploring that one and I definitely know when I've eaten bread as I get bloated and sluggish).

Well time for breakfast

Take care

Ali

[Jeanabelle60 in reply to Ali_H]

I'm going to do some research online about anti-inflammority diets, very interesting indeed. I've only ever used Turmeric when cooking rice but i have seen articles recently about this spice and its hidden qualities.

As its Saturday I'll have my wee party, something sweet and a bottle of Shiraz. All the best Ali.

[Hobbits]

Hello, it's sounds like you have fully thought things through.

I was taken off all meds at one point because I suffered a toxic build-up ( overdose) of RA medications, I was taken off so that my body could recover. In the meantime I was put on oral steroids. I read up on them, and didn't want to take them. But I did, at the suggestion of my medical team. I work full time, and in order to keep working I need to be able to function and move, I was more scared of a flare, than the side effects of Prednisone.

The Prednisone worked better than anything I have ever took!

I felt like I was 20 years old again, I was absolutely and completely pain free and had bounds of energy. I see it as a miracle drug.

On the flip side steroids carry a host of side effects. I completely understand your feelings in regards to gaining weight. I do not think you are vain or anything like that. Your feelings are real and well justified.

I was on Ptednisone for approx three months. I went in knowing I could gain weight. I was also on the lookout for any mental health issues that developed due to the drug since I had never taken an oral steroid before, I one had a cortisone shot in my shoulder, that made the difference between me being off work ( an possibly loosing my job) and being able to do my work with no issues whatsoever.

I gained 22 pounds total, it is mostly water-weight.

I'm now back to my usual yoga routine, and hoping the weight sheds nicely.

Not everyone on steroids gains weight. Just like some meds are tolerated by some and not others. Everyone responds to everything differently. I am also sure just as many people have not gained weight.

I think you are making the best decision for yourself. You have it if you absolutely need it. For me it was the same. I got to a point where without any other RA drugs, I absolutely needed it. It got me through and I am thankful for it.

[Jeanabelle60 in reply to Hobbits]

Hello Hobbits, that is very interesting....one of my brothers told me the same thing.....loads of weight and on stopping the weight just fell off. For now I'm managing on 6 paracetamol and 200mg of tramabol. I can drive, walk, clean the house, shop ...... so I'm grand for now but I know my body and I know that isn't going to last for much longer. As it is I have to wear wrist splints to do all of the above. They are ugly things but there a great for driving etc....

As I am now retired I am able to pace myself so if I can't do something today there is 'always tomorrow' as Scarlett O'Hara famously said (you need to be of a certain age to know that lol).

I have compromised with my Rheumy nurse and told her I will take them when things get really bad. I just won't go out of the house during day light and order my shopping on line!!!

Thanks again for for your very helpful reply and I hope thing remain well for you, all the very best. Jean