Tired of dealing

Bones, joints and muscles
1

I was diagnosed in April this year with RA. Never had any problems like this ever. I am 55 was active and enjoyed life and family. I feel like this illness has striped me of who I am. I sometimes don't k ow how to deal with it. I feel bad even complaining here because I know their are a lot of people so worse off. I quest I just wanted to. Ent and someone hear me

This came on so quick and very hard. It took almost 4 months to get it in control and that happened with infusion

Since I have felt better my dr has been weaning me of prednisone in down to 2.5 mg till Sunday then I am off of it. It was at 20 mg. Also decreased my MTX but I can feel this sneaking back my knees are stiff I can't kneel I feel like I'm 85

I really don't want to complain I really don't but when will I ever feel like me again ??

2

Rheumatoid is a dynamic disease that morphs....this is why a medication that helps today may not help tomorrow.

By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in that person's body...Both Enbrel and Humira are TNF, tumor necrosis factor. Individuals whose rheumatoid responds well to either Enbrel or Humira are said to have TNF driven rheumatoid. Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven.

Sometimes rheumatoid arthritis can be successfully treated with an NSAID...non steriodal anti inflammatory drug...such as Orudis, Feldene, Naprosin, Naproxin, Motrin, Indomethacin, Butazolidin to name just a few.

Steriods...not to be confused with anabolic steroids...prednisone, budesonide, methylprednisolone are three of many steroids. Many decades of study have taught us to use steroids judiciously because steroids cause unwanted side effects such as bone density loss. Today, steroids are prescribed using a burst approach...high dose fast start, immediate graduated decrease, off.

DMARDs & Biologics... disease modifying anti rheumatic drug...

This class of medications modify, literally change the way rheumatoid behaves... Methotrexate (now the gold standard), hydroxychloroquine, sulfasalazine, Orencia, Remicade are all typically oral.

Rituximab is delivered by infusion as are some of the others.

Enbrel in the mid nineties was the first DMARD. I still remember watching the television news that night with tears running down my face. Those of you who face rheumatoid today should never face the full fury of this disease. Nevertheless, matching a sufferer with the best medication to defeat their rheumatoid continues to take time. As the class of medication used increases, so too do the possible adverse side effects. Be patient and work with your rheumatologist, only a board certified rheumatologist, to fine tune a treatment effective against your rheumatoid.

54 years of severe juvenile rheumatoid has left my body permanently damaged and deformed because medicine did not have the wealth of knowledge it has today.

I am grateful for all of the analgesics, NSAIDs, and steroids that made it possible for DMARDs & biologics to modify even my severe juvenile rheumatoid. Today my JRA relatively quiet. And once my rheumatoid quieted down, I forgot about the really tough times it raged.

about steroids...

I am of the opinion that an endocrinologist should supervise steroid withdrawal...the symptoms we express correlate directly with symptoms of Addison's Disease which is an adrenal gland hormone insufficiency.

I am quoting from Mayo Clinic, a highly esteemed institution in the USA:

quote

Extreme fatigue

Weight loss and decreased appetite

Darkening of your skin (hyperpigmentation)

Low blood pressure, even fainting

Salt craving

Low blood sugar (hypoglycemia)

Nausea, diarrhea or vomiting

Abdominal pain

Muscle or joint pains

Irritability

Depression

Body hair loss or sexual dysfunction in women

unquote

The further progression of Addison's leads to:

quote

Pain in your lower back, abdomen or legs

Severe vomiting and diarrhea, leading to dehydration

Low blood pressure

Loss of consciousness

High potassium (hyperkalemia) and low sodium (hyponatremia)

unquote

Mayo clinic advises we need to consult our physician when:

quote

Darkening areas of skin (hyperpigmentation)

Severe fatigue

Unintentional weight loss

Gastrointestinal problems, such as nausea, vomiting and abdominal pain

Lightheadedness or fainting

Salt cravings

Muscle or joint pains

unquote

Sounds like they were listing the symptoms of steroid withdrawal, doesn't it...

I have a pill spiltter that opens up on a hinge to expose a V shaped tray with a catch basin. You set the pill within the V, tilt the splitter so that it snuggles the pill forward deep with the V and close the lid. The sharp razor within the lid easily slices even tiny presnisone in half.

I now use the burst method when steroids are necessary...high fast on, immediate decrease, off

example

30 mg day 1

25 mg day 2

20 mg day 3

15 mg day 4

10 mg day 5

5 mg day 6

3

Complain away cobber, I think sometimes it is all we have.   Certainly can't make you feel any worse.

4

You WILL feel more like your old self again. You WILL find the right meds but it might take a few attempts. Every one of us have different symptoms with our RA and respond differently but there are several drugs out there but hopefully you'll have good results right away. Be patient but keep talking to your doctor. Hope you the best!

Em

5

how are you feeling today?

warm hug

6

I ve had similar experience when I got RA aged 62 ( now 65. ) it felt like a huge loss of my old life and personality- a kind of grief I suppose. It affected me physically emotionally and socially despite my best efforts at a 'can do' attitude. I hated being defined by an illness. For me too an infusion has worked and I am much better and am continuing to feel less fatigue and aches. I ve started different hobbies- swimming and line dancing! - to keep my joints moving. I ve had to accept I don't have the stamina I used to have but can do quite a lot again now if I pace myself. I know what you mean about feeling 85!

On an aside about the pred. I did pretty much the same as you down to 2 half mg then had to go back up again. It took 2 years to finally come off it, decreasing 1 mg a month or so towards the end. So the pred and mxt doses may still be in flux. Make sure you let them know you have some knee ache returning. Hope you readjust over time and find positive direction again.

7

My dear friend, yes it is hard, and i feel for you very much, you should not feel bad about you'r self, you say you where diagnosed in April this year..? i can tell you you have a long way to go yet dont let me saying this make you feel worse, i was diagnosed in Feburary 2015 and believe me i had it so hard and it came on so fast it was very scary. I could not walk and was confind to a wheel chair, my partner had to help me on and off the toilet, dress me , even cut my meat for me as my hands and finger's  where so swollen and painful it was imposible to do it my self.

At 53 years old i was the fittest man in my town of Quartiera in Portugal, cycling 200 kilometers a week and going to the gym 3 times a week, so you can imagine how dramatic my life chenged.

But....and it is a big but, there is a light at the end of the tunnel , but it is very far away...but you will get there, i was on Methetraxate , plus steroids, plus all the other tablets i have to take to combat the RA medication, i also have had pulmanary embolism's in both lungs, and pneumonia this year, this is all to do with the immune system  being supressed and i am now on Waferin too.

Haveing said all this after 18 months of finding the right treatment i am now on Roactimera which i have to inject my self at home, i know i know it sound a bit painful ,but it seems to be doing the job.

It is a long road and it is diffecult , i am still finding it hard to accept but you just have to get on with it........yes my life has changed and i still wonder ifi will ever get back in to te gym again, only time will tell.

Dont get to down and i know it is easy for me to say that , but believe me ther are people worse off.....one of patiants my specialist deals with is only 14 years old, so you have to think how lucky you have been to enjoy life so far.

I hope this has given you an insite in to some one else's life with RA and has made you feel a little easier in  you'r mind. Dont forget there are people here for you to chat with and exchange you view's.......you are not alone.

8

I, like you, was diagnosed at 55 and spent the next two years fine-tuning my mtx, plaquenil and the occasional use of prednisone. It does get better with time. And a judicious use of pain-killers, prescribed by your rheumatologist helps a lot. You probably won't always feel like this. So there is hope.

Best wishes.....

9

Thank you Tim for the information and wishes. Best of wishes to you also

Debbie

10

Thank you. I appreciate the reply back I know there are others worse then me. I always tell myself and kids that all the time. I felt selfish writing what I did. But I just had to vent. Stomp my foot and have a Trantrum I guess😃 Thank you again

Debbie

11

Thank you so much for the kind words and advice. I very much appreciate it. I just had to vent I'm glad this group is here

Best wishes

Debbie

12

Thank you Tony It's good to know other people are here with advice

Debbie

13

Thank you Em for responding I appreciate it very much

Debbie

14

Thank you very much

Debbie

15

Some scary laughter is the best medicine, personally I think venting is far better.