Has anyone tried Prednisone?

[Bell990]

Has anyone been given Prednisone (corticosteroid) for joint and muscle pain? How much did you take? Did it work for you? How long did you take it before you noticed improvement? Did you experience any side effects?

[AnnNY]

I'm not sure I'm the one to answer this, since I'm not officially diagnosed with APS (although aspirin and heperin have help my neuro symptoms). Even my lupus diagnosis seems to be on and off. However, prednisone does help me greatly with my joint and muscle pain. A former rheumy used to prescribe 4 days on 20, 4, days on 15, 4 days on 10, and 4 days on 5. If you're lucky the improvement "sticks" to some extent. Prednisone also seems to help my "brain fog" and neuro issues. 20 makes me a bit hyper and it's hard to sleep. Otherwise I feel fabulous while I take it. But I'm 61 and have osteoporosis which makes prednisone dicey. It has lots of very bad side effects long term. But if I am in a bad way, even a short course of prednisone can help even after I stop taking it. It seems to calm down your immune system.

[Bell990 in reply to AnnNY]

Thank you this is very useful info. I can't sleep either, do you do anything to help you sleep?

[AnnNY]

I take Klonopin. I've tried about everything else, but this seems to be the only thing that works for me.

[Lozzer]

Hi. I have had APS for around 15 years now. One of the resulting health issues has haemolytic anaemia which is treated with steroids including prednisone. Prednisone suppresses the immune system and so counters auto immune diseases. It is an amazing drug but has major side effects most directly related to dosage and length of time on the drug.

I recommend that you Google info about it before speaking to your doctor so that you are in an informed position. It side effects short term can include insomnia and weight gain. It did for me. Long term there are issues with loss of bone mineral density and increased risk of some cancers.

It cant however be administered and withdrawn easily. Although a high dosage may be administered initially, it can take many weeks or months to be incrementally withdrawn from the drug. I now no longer require it but languished for about a year on a relatively low dose of 5mg beforehand in hand with another drug (imuran) which enhances the effect of the prednisone.

Its not something to take unless essential for your health so be advised by hemos and rheumys.

[Monkey123]

Yes. I was put on it for Crohn's.

It helped with Crohn's and also my joint pain (from APS).

But........ Nasty drug! Serious weight gain and mood issues. Can even lead to depression.

I now take Azerthioprin and that keep Crohn's and joint problems in control.

My advice.... Keep of the steroids.

[sydney_mrfox]

I was diagnosed with SLE and APS mid 2013, aged 29. My case was pretty severe at the time due to onset of severe preclampsia at week 24 pregnancy. In the lead up I had chronic arthritis type pain in the joints of my toes. I was given 30mg of prednisone daily and the joint pain instantly went away within 24 hours of receiving the first dose. Over a period of 5 months I was weaned off the medication by gradually reducing the daily mg. I had insomnia when on the high dose but I didn't feel tired - almost a feeling of euphoria. As the medication was reduced I experienced a distinct change in mood and felt very depressed. This lasted until I got down to 5mg. I also experienced weight gain, especially round the face and hair loss.

The medication is wonderful for pain relief however it comes at a cost (side effects) and can take years to be weaned off. I was lucky my SLE symptoms were mild so I didn't require ongoing steroids.

[Squeezer]

I was on it years ago and, I have to say, I wouldn't go back on it again. It affected my mood greatly- made me feel very angry a lot of the time and low at other times- but we are all different and you might find it suits you and helps with the pain. You can always stop taking it if you don't feel right on it.

Good luck

[puddlesmudge]

I had a steroid injection for my RA which is supposdd to last about 3 months, it made me feel slightly better initially but I have been depressed and didnt link the 2 until ive read other stories I also felt that id put weight on which is unusual for me this time of year.

[dalalf]

I took Prednisone 10mg several times during the past four years each time for a period of three weeks it helped me as I have APS and Sjogrens but I take it when I know I will need it like when I travel and I stop after 3 weeks. as Prednisone when you start and want to carry for longer periods you will have to increase the dose to become effective and it affects the bone density.

[tim47]

I was on a very heavy dose for quite a while very many years ago (1970s), forget the details though. Then it was a last resort for what we now know as Hughes Syndrome, Prof Hughes used to use a slide of a patient who had developed the classic much rounded face as a consequence. A definite life saver but caused a lot of problems not least considerable weight gain that I have never lost. Now have arthritis in many joints, probably partly due to prednisolone . I remember needing enteric coated prednisolone. I guess it did what was needed in those days, just paying for it now. I don't think they are so keen to give it long term in high doses these days. I have since had a low one week dose with antibiotics, no additional problems.

[Lure2 in reply to tim47]

Hi tim47,

You have made quite a long journey and have so much experience from when all started long time ago (not too long though) together with prof Hughes as I understand.

Best wishes from Kerstin in Stockholm

[djmarian]

My husband takes 5 mg prednisone every other day and 200 mg -2x daily of plaquenill and this helps the joint and muscle pain. He has been on this regimen for the past 2 years plus.

[Medically_confused]

I have sticky blood but haven’t been formally diagnosed with APS as I’ve had no treatment for blood clots and not yet tried pregnancy. I found your question when trying to do some research (as I haven’t really been told much about the sticky blood / APS). Basically I was diagnosed with Psoriatic Arthritis 10 years ago but my current specialist has always insisted he doesn’t think I have it and scans always come back clear but the joint pain symptoms and stiffness match it. Anyway, I was diagnosed with fibromyalgia 5 years ago and around the same time I was also flagged for having 4 positive lupus anticoagulant tests. I have double vision, daily headaches, regular migraines, memory problems, balance issues, bruise easily, have had circulation issues all my life, pins & needles, spreading cold or warm feelings in my legs and anything below the knees is constantly cold. Also, the feeling I get on a plane, I now get just from sitting for a while. My feet & sometimes my legs regularly become bright red or blueish purple & swollen. Some of these symptoms could be caused by the fibro but others not so much. I’m on aspirin for the sticky blood but also receiving treatment for the fibro & arthritis. DMARDS (treat arthritis) haven’t really worked for my joint pain in the past but I had amazing results with prednisolone so my specialist assumes I have some kind of Rheumatic condition. Whilst trying to find out if prism glasses are effective for double vision caused by APS (btw does anyone know), I found out that APS can cause joint pain similar to arthritis. I am now trying to explore the idea that perhaps my arthritis was APS all along!

So my response to your question may be irrelevant or it may not but I can tell you that prednisolone helped me to get back to work after being mostly bed bound for 6 months. I’ve had 3 long dose periods (starting at a high dose and lowering the amount each week) and 1 shorter period at a lower dose. The results pain wise & fatigue wise were the most remarkable thing I’ve ever seen BUT, with each course I gained weight. Weight that I have been unable to lose even though it’s been 4 years since my last course. I now refuse to take it again because I’m overweight and I’m afraid that another course would certainly lead me into obesity which obviously has its own health risks. A lower dose may not be as bad, I did notice a lot less weight gain with the shorter course but you’d have to weigh the negatives & positives. I did try steroid injections and found that the first one was amazing but the second was less so and the third was hardly noticeable (4 month intervals). What my specialist and I have agreed is that I’ll just have 1 in the winter to give me a boost when my health is at its worst. You may want to discuss trying the injection before risking the oral pills? I know my response is complicated as my health but wanted to share my experience of it in case it helps you at all.

[Lure2 in reply to Medically_confused]

Hi, Please see my answer to your answer below!

Kerstin

[Lure2]

Hi and welcome to our Forum,

You have now answered a 5 year old question so you may not be able to have an answer back. I quickly read your answer and see that you have tested positive for 4 Lupus Anticoagulant tests.

You take only Aspirin what i can see for too thick blood and still have a lot of neurological symptoms. I hope you can find a Specialist of autoimmun illnesses (you have also fibro but that could be another autoimmun illness also).

I hope your Specialist daily works with people like us with autoimmun illnesses. That is exstremely important because such a Doctor knows to give you the correct diagnoses, drugs and anticoagulation you need.