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Discussion Starter #1
I have recently been put on prednisolne. They are starting me off on 15mg and then slowly reducing them.

At the same time, my rhumy suggested I go down to 200mg of Plaquenil rather than 400mg as there is no need for the extra 200mg due to the pred.

My questions are:

Does prednisolne help reduce fatigue?

Can I take pred together with the plaquenil? Or should I leave a few hours gap between the 2?

Does pred need to be taken with food like plaquenil?

Can I take paracetemol whilst taking pred?

I can't believe a) I didn't ask these q's to my rhumy. b? She didn't tell me these things.

To play it safe I will be seeing my GP this week too, but just wanted to hear what you guys have been informed too.
 

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Hi Surferboy... plaquenil is a slow onset medicine so it is ridiculous reducing it 'because you are on pred'... it takes 3-9months to work so I would not be happy if my rheumy reduced it, unless there was good reason. It sounds as if you are reducing your pred and to also reduce your plaq means you have less cover..plaquenil is a good staple drug with few side effects. I am on 400mgs plaq and reducing steroids (down to 5mgs), it has taken me a while and I have gone very slowly..don't want to go back to hospital thanks!!:( I will probably stay on plaquenil for the foreseeable future and hoping to get further reduced on steroids, but I know it is hard below 7.5mgs..it has been the hardest bit..I am reducing by 1mg a month now, so getting there!)
Pred can help my fatigue, definitely, but can also affect my sleep a bit.
You can take plaq and pred together after food. I actually take 400mgs in the morning as it stops gas production!!!
Yes you can take paracetamol with these drugs, I also take the occasional ibuprofen for headaches etc. It will be interesting to see what the others say with regard to your plaq reduction.
Take care.
Claire X
 

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Hello there,

Prednisolone can help reduce fatigue to an extent, everything is relative. It mainly plays an anti-inflammatory role but can also improve allover well-being.

I always take all my meds together. If I were to leave hours between meds I would do nothing other than take meds (and eat becuase they have to be taken with food) all day (for example in the morning I take 7).

Yes, pred is better taken with food. It minimises any stomach problems.

Yes, many people take paracetamol while on pred.

Rheumies generally don't say these sorts of things. The only time mine says anything is if there is a particular precaution.

For example, she did say to make sure I avoided sugar and ESPECIALLY salt while taking pred. The first for weight gain and possible secondary steroid induced diabetes (and no, not everyone who takes pred gets that, it's pretty rare and usually at higher amounts or longer term). The second for water retention.

When your doc has not given you sufficient info you can always ask your pharmacist - think I've said that before, must be repeating myself.

Lastly, don't stress. It is far more harmful to you than all the meds combined!!

Katharine
 

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Er yes, I do also agree with Claire on the plaquenil reduction. The dose is usually calculated on ideal body weight (+/- 6.5mg per kilo). It is sometimes reduced to 200mg for people who go into medicated remission or for those who have problems tolerating the higher dose. Very small framed people will sometimes take 300mg. I don't think you are concerned by any of the above.

As Claire also said, pred is not a replacement for plaquenil which remains your baseline treatment and has far less long-term side effects than pred. Ideally pred is given in short doses and tapered off quickly or reduced to a low maintenance dose if it can't be eliminated completely. Most doctor's will be trying to remove the need for pred long-term by using other steroid sparing drugs. Plaquenil can be considered as one of those.

Katharine
 

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Hello surferboy

This is a short course of Pred by the sound of it ? It is just to rapidly reduce inflammation
during a flare, or what ?

I can't help you with your questions about Pred except to say that I have never heard of any problems with the other things you enquire about it and to suggest that you ask your pharmacist or GP. I expect others will have more experienced advice.
Prednisone certainly can reduce fatigue temporarily because it can make people hyper so that they do far more than they should and it can also cause sleeplessness. The end result can be feeling completely exhausted and general unwellness.
Fatigue is very hard to treat and is in fact the symptom most complained about, more than actual pain.

I am however going to comment on the notion that Plaquenil should be reduced because you are taking Prednisone. I am not a doctor just an experienced, knowledgable patient but I have never heard this being suggested before and I think it is daft.

The medicines are completely different for one thing. If you reduce the Plaquenil you will very likely have a worsening of symptoms quite soon, as that is a very common experience. The idea is usually to use the Pred to get over a bad patch. Plaquenil can be taken for years without any ill effects. The short term side effects of Prednisone are well known and the long term very serious side effects mean that it is used only when absolutely necessary.

Cheers
Clare
 

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Discussion Starter #6
Wow guys! Thanks for the detailed replies :)

Hmmmmmm! I think i may just give my rhumy a call - although this would mean having to speak to her scary secretary first :( I'm going to ask her if I can stay on the full 400mg plaquenil. I can't believe she's reduced it as for the first time ever my compliment levels have fallen marginally below the "normal" level!

Also, claire t, the pred course is spread over 3 months. 15mg p/d for the first 2 weeks. Then 12.5mg for the next 5 days. Then 10mg for next 5 days. Then 7.5mg until I see my rhumy in June. Would this be considered a short term dose?

PS As for my idea of speaking to my GP - not such a good one. He prescribed totally the incorrect amount of pred. Good thing that I was switched on. For others who just took what ever the dr gave them this would have caused a major problem!!!
 

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Hi Suferboy

1. I think the Plaquenil reduction is non sensical.

2. Pred is best taken in the morning.

3. After food.

4. My doctor prescribed a medicine to proctect my system from effects of Pred despite it already having an enteric coating.

5. Longer than 3 months a calcium with Vit D tablet can be prescribed. I was taking it after 2 months.

6. Eat healthyly , avoid salt.

7. Pharmacist told me that longer than 3 months then you are meant to carry a steroid card to noitify in an emergency etc etc.

8. I started on 45mgs and felt over the moon. Not sure what symtoms will improve with you but look forward to hearing from you as a follow up.
 

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Hi Surferboy

Three months wouldnt be considered a short term dose. After that length of time on pred you would need to do a slow taper when you are coming off this drug. Generally speaking the body produces natural cortisone at about the equivalent of 7.5mg prednisone daily. After taking the drug for some time at doses equal to and over this, the adrenal glands can shrink. Basically the pred suppresses/takes over the natural function of the adrenal glands.

Therefore its important to taper slowly to give the adrenal glands a chance to 'wake up' and start producing cortisone naturally again. The risks are adrenal insufficiency which can be very serious.

Good luck with the Rheumy! I also have never heard of anyone being reduced on the Plaquenil because they were put on prednisone. It just doesnt make sense. They both do very different jobs.

Take care for now
Joan:rose:
 

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Discussion Starter #9
Nicky, I too have been given a calcium and vitamin d supplement - fruit flavour MMMMMM :)

Joan, according to my rhumy she has given me a very low dose - starting at 15mg and reducing sllowly down to 7.5. This is over the space of 3 months. I only hope that my body can tolerate the pred. I know I can't handle ibuprofen or diclofenac too well.

As for the pred.... I may get blasted for what I am about to type - but, I think you all are right in saying that reducing the plaquenil is silly. My Rhumy once took me right off it for 2 months. Then when I next saw her she could not understand why she had taken me off them. My symptoms also got worse over that period!!! I was fuming!!!
 

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Hi Surferboy

Yes 15mg wouldnt be considered a high dose, especially with the quick taper proposed. However the three month period would, in my view, not constitute 'short term' use. Short term is usually described as anything up to about two weeks. However its all a bit subjective depending on how your doctor views it.

Hope that helps
Joan:rose:
 

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Discussion Starter #11
Right guys, a quick update - followed by a few more questions :)

I've been on 15mg of pred since last Wednesday. The knee joint pain and elbow joints pain seems to have subsided a bit. But I am still getting some weird pains in the lower back area - which I worry about as it is right where the kidneys are. I know most on here have said that there is no kidney pain, but both my rhumy and Dr who carried out a lymphnode biopsy have said that you can feel kidney involvement.

I am waiting to see if this pain also subsides. The fact that I had blood in my urine for the first time ever is also a concern with this pain!

So, roughly how long after people have begun taking their pred have they noticed a difference in their symptoms?

I have noticed a lot of what I hope is only heart burn since I begun taking it. Is this normal?

I am also suffering a lot of severe night sweats, which only started after I took the pred. Oh, and a lot of sleeplessness - which a lot of people on here have said is normal).

I sure hope the pred takes its course and I come off it very soon.
 

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When I had my first course of Pred (last Autumn) I was started on 20mg and tapered pretty quickly. If you are getting heartburn then you should ask your GP for something to protect your stomach eg Omeprazole is very good. "Only" heartburn can get worse in the long run - but don't panic! Are the Pred enteric coated ie have coloured shiny coatings?
If not get them changed to help protect your stomach.

I've always been told to take my Pred (now on 7.5mg for the foreseeable future) as early as possible in the morning with something to eat, in my case a banana and a cup of coffee!
My real breakfast and other pills come later. I was told to take Plaquenil after food in the evening plus some other pills! Omeprazole 20mg I take before lunch and it lasts 24 hours which is brilliant.
This regime was really organized by my GP who, for some reason, (I am very lucky indeed) is very clued up about Lupus and the treatments.

Of course, different Docs have different ways of operating and every patient is different!

It only took about 10 days for some reduction in symptoms and I did have sleep problems on the higher doses, but not on the dose I am on now.

Good Luck
M

PS Reducing your Plaquenil makes no sense to me either. I could not take 400mg or 300mg because I started to get neurological side effects. I had to go back to 200mg, wish it could be more!
 

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You should notice improvement within 2 days from the prednisone if you are on a high enough dose. 15mg is typically high enough to help. If you don't notice significant improvement then the side effects you note of heartburn, sleeplessness, etc. may not be worth it & you should discuss your concerns with your doctor.

It would be extremely unusual to have pain from a lupus kidney problem. Almost unheard of actually. Even people with severe nephritis almost never report pain in their kidneys. Have you shown the doctor where your back pain is? Do they agree it is where your kidneys are? Lower back pain is usually not due to kidney pain, as that's NOT where the kidneys are located. Blood in urine and middle back pain are classic signs of kidney stones though... Trust me on this - you would have much more serious blood and urine abnormalities if you had a serious lupus kidney problem.

I do have a concern for you though; regarding the expertise of your rheumatologist if you are being told lupus kidney problems are known to be painful and suggesting you drop to 200mg Plaquenil just because you have been placed on prednisone.
 

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Hi Surfer,
Just to add .........I'm currently nursing the baby of a mum with severe nephritis. She felt no pain and was diagnosed because of increasing oedema and protein in urine. Confirmation was by blood tests and biopsy. Her BP was also very high.
I think this is fairly classic.

Incidently i had inflammation of the sacroiliac joints with a flare.......very uncomfortable. The joint lies where the dimples are at the base of your back.

If you draw a line around through your umbilicus to your back - thats roughly where your kidneys are.

PS I have had a wonderful response to steroids within days, but on a higher dose. Be sure you wash them down well with water as they can cause an oesophagitis.
 

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From The Lupus Book Dr Daniel Wallace p140 2cnd edition

How can you tell when the kidney is involved?

Lupus patients don't say," Doc, my kidney hurts!" Pain in the kidney area would be felt if the patient had developed a kidney stone or severe kidney infection or had suffered a muscular spasm of the lumbar spine. One of these ailments have anything to do with lupus. In fact most patients with kidney involvement have no specific complaints that can be immediately traced to the kidney.

.............. the most specific correlate of lupus nephritis is .. protein in urine.
"What seems to be heartburn" should be investigated.

Clare
 

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Discussion Starter #16
Well, trust me I'm seriously looking for another Rhumy. Thing is I need to sign myself out first with my current Rhumy and then go through the waiting process for the next one :(

Phlox, I thought I'd need to eat a lot more before taking Pred. Right now I have it after a couple of sandwiches or bowl of cereal! If I'd known a banana or 2 are all thats needed :) Oh and yup, the pred is coated.

Regarding the heart burn - it seems to have subsided somewhat. Clare, I spoke to my Rhumy about this and she said chances are that it was Pleurisy - although upon examination she could not hear anything in the lungs. Because I've never had heart burn before, I don't really know what it's supposed to feel like so can't ascertain if that is what I have. Can anyone please give a rough example of what it feels like? For me it's a pain in between the lower breast bone area - especially when I breath in. very similar to pleurisy pain I know. It also kicks in soon after taking the pred hence me thinking its heart burn.

All this is new to me as I've never really experienced any real kind of pain - except when I broke my arm and the occasional sporting injury!! Heart burn, indigestion etc is all new to me :(

As for the kidney pain - worrying thing is that I trust you guys more than my Dr's (please take that as a compliment :) ) But I am aware that I do need to see someone who can get to the bottom of the pains!

I think the pred has kicked in a bit now. Joint pains have subsided. Its just this annoying back pain thats... well a pain! It especially hurts the area when I breath in.

Will wait a few days and see if things get better or worse.
 
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