Problems with RA

Bones, joints and muscles
1

Hi 

I posted a while ago that I was struggling with my RA, it was suggested it might be the reduction of my steroids. I managed to get into see my rheumatologist early. He was lovely as usual. He confirmed it was most likely reducing the steroids that have caused the problems. Ian now taking 10 mgs of prednisone daily, hydroxiclooqine 200 mgs twice a day. My problem is after about 10 my symptoms reduced. Last night they started again with avengance, I don't understand what is going on. Any advice please.

Thank you 

2

Hi Wendy sorry to hear your not doing well, I can definitely relate to your problems. What I found worked for me is I watch my food intake. If I notice that I was doing well up to a point of eating something then I know that food trigger my symptoms. Try to watch what you eat and drink to see if that could be a source of your problem. All the best. You can probably Google 'what to eat with arthritis'.

3

Thanks for your reply, can't say I have really noticed if that affects me but will re look at food and drink. Sometimes it a pain literally 

4

Hi Wendy

didnt see your earlier posts but

hydroxychloroquine is quite a mild DMARD for those with mild RA. Did he talk about adding a further DMARD like methotrexate or sulphasalazine? My rheumy explained these DMARDS are the ones that hold back development of the disease and the steroid is used to lower inflammation while the DMARDS take time to work and usually has an immediate effect on reducing pain and swelling.

In other words they mostly don't use steroids to control the disease only to tide us over when a lot of inflammation.

Could you contact your rheumy again or rheumy nurse? If you are in pain they need to know.

What is the plan with your steroid? Ie how many weeks at 10 mg and so on?

This  time last year I was on 10 mg as it was taking a while to see which med would control my RA . Then I was on 7 half for months but Now on 3 mg and  I hope to be off by Feb as other medication is working for me.

do hope you find your way through this.

 

5

Thank you for your reply. It was mentioned earlier this year that he would probably add a further drug, but when I went back in the summer I was absolutely fine. Therefore steroids reduced. 

I live in Spain so no nurse to ring. I go back to rheumatologist early December. Plans re steroids I'm sure will be discussed then. If I continue like this I will try to get an earlier appointment. 

6

Thing I have found reading peoples posts is we all react different to medication with our condition. I've been on 10 mg prednisolone for 3 years and have tried methotrexate plus the biologics Humera,Enbrel and Rituximab. Was better on methotrexate but it was effecting my liver.some people are OK on it and you could find lots of release on it.I am also on Pregabalin 450 mg day and amytripyline 25 mg and sulfasalazine 2000 day.some people can't tolerate same as others. Some drugs work for some and not others. Still in agony til after lunch then on n off throughout day.my left foot is now causing me problems n struggling to get off to sleep with pain. Ibroprofen gel is good to rub info effected joint pain.

You could ask on your next visit to try other medications. Can you get the Ibroprofen gel in Spain like we do from chemist.Even Lidl sell it.

Sending big hug to you

7

Sorry you are struggling, and yes we are all different and react differently to various things. I ibrufen I use comes in like a roll on lotion, it seems to help for a short time. I also use hot and cold pads, but to be honest I could do with a whole body suit lol. 

I am pretty sure other medication will be suggested at my next consultation.

Thank you 

8

What symptoms are you having?

For example, I've found that different symptoms are triggered by different things. For instance, I have a terrible time with fatigue. If I mess up with sleep habits, or if I work too many hours, it will trigger a flare.

I am very sensitive to steroids. Every single time we try to decrease them, all my symptoms get worse.

9

I find Tiger balm assists painful joints.

 I have had RA for 6 years

10

I will look into Tiger balm, thanks 

11

I agree with the comment on diet but for me ive had to obtain from all foods that produce an acid ash. It has taken 6 months to take effect though some people take longer. I'm really good now after 12 years of hell. I also take black strap molsses and cider vinegar. No dairy at all or meat.  The only drug I take is 5 mg pred which I'm weaning off. 

I understand from those that have used this diet ( can't disclose on forum) that once all symptoms are clear normal foods can resume so it's not a lifetime thing. 

5 years ago I got 80% better on this program but then cheated this time I'm going all the way I believe also in time it kills the strepacoccus infection which some believe is the root cause of ra in some people.

12

Thank you for the information something else to research 

13

Nathan7263

I would like to know more about the diet. Why can't you disclose on forum? 

Is there a link or website that can give us more information.

14

I've deleted the post asking for other user's mobile number. If users want to exchange contact details or information not posted in the forums use the private message service. Do not ask users to post personal details like email addresses or phone numbers in the open forum.

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

15

Thank you

I would not have responded to this request.