The Lupus Forum banner
1 - 10 of 10 Posts

·
Registered
Joined
·
25 Posts
Discussion Starter · #1 ·
I am steroids 20mg/day and yesterday didnt took it in the morning, by evening I was a pack of pains and the night was even worse...
( also whats the effect of such a big dose? im on it for last one week and dr says he will take me out of these asap...)

Today I feel depressed and saddened as I realise my body is as sick as before just that these medicines are covering some of the effects but dont treat anything at all.

For past 5 days Ive been going down rapidly and cant get rid of a very painfull shoulder pain.

Id really use a word of encourgement to be honest...

What about reflexotherapy? Im going today to speak to them about some sessions, found really good things abt it and been told it works on lupus....

Sorry for the moan..!!
 

·
Registered
Joined
·
7,800 Posts
Hi Virginia,

I'm sorry to hear you're feeling so down and don't worry about moaning -if you can't moan here, then where can you? :)

It's difficult to answer your questions correctly without knowing the whole story but it sounds like you are ONLY on 20mg prednisolone and nothing else right now? Is that correct?

Is this a trial period that the doctor is conducting? Often a doc will put you on a short period of steroids to see how well you react to them (i.e. do they help?) and also sometimes to gain control of a flare you are having before other meds kick in.

Are you not on any other lupus meds like plaquenil? Plaquenil takes longer to work (hence why some people also need a short course of prednisolone) but has little or no side effects, it is a very safe drug.

The thing is - things will get better!! It just may take some time. I had very out of control disease activity and it took around 18 months to actually really stabilise it. Of course, many people find stability a lot quicker.

As for alternative therapies. Some may be possible, HOWEVER you absolutely must discuss anything that you wish to take/try with your rheumatologist. There are many things on the market that "claim" to do wonders but they are not submitted to testing as normal drugs would be and can be very dangerous. It is not because they can be bought OTC that they are safe - it can indeed be quite the contrary. They can interact with other drugs that you might be taking and can also affect things like kidneys without you knowing. Also, beware of any website providing information on an illness that is a commerical website (selling its own "cure"). Even some types of massage, if wrongly performed, are not advisable.

I don't know much about reflexotherapy in itself but would imagine that it would be one of the things that is pretty safe.

Another thing is - if you are feeling very bad then you need to tell your doctor that. Often we think that if they gave us meds for a while and tell us that it will be for whatever amount of time, then we have to just accept that and not say a word. The thing is, the doctor needs to know what is happening and we need to learn to complain sufficiently to get that across. We are all taught not to complain but sometimes that isn't a good thing.

If you need to tell the doctor you are in pain and just say "it hurts" that is a very vague notion to a doctor. Things like using a scale of ten can be very helpful (ten being the equivalent of giving birth - if you've had that experience). Also, tell the doc what the pain prevents you from doing. Does it stop you sleeping? Does it stop you walking, being able to go and do shopping...?

You also need to be aware, if you are feeling down very often, that depression can be a very big part of lupus for many people. It is not something to be ashamed of but something that MUST be treated.

You will know yourself if you just have the occasional down day or if those down days are too frequent.

I hope that helps a little, sending big warm, healing hugs :hug:

Katharine
 

·
Registered
Joined
·
25 Posts
Discussion Starter · #5 ·
Oh well, I am not only on steroids, Im on unitrexate ( 7.5mg/week) on second week, zopent for stomac, folic acid once a week and xobix. He said he will over treat me for some time as when I saw him I was in deep pain, depressed and had lost a lot of weight...

I only did a ANA test and a RF test, first come positive, second negative and now patiently have to wait to see dr on 1st to get more tests done...

Im also on daily iron, calcium and fish oils and total change of diet...

Thks so much for answering me Katharine, lifting up spirits does always good..

:)
 

·
Registered
Joined
·
2,661 Posts
Hi Virginia,

Nice to meet you. I am sorry that you have been diagnosed with SLE, and are feeling down about it.:(
It is understandable that you are having trouble coming to terms with the diagnosis. It is a serious disease, and needs to be taken seriously, but if you learn how to manage it and your lifestyle it is possible to live a long and fulfilling life still. Give yourself time to learn and adjust.

From reading your other posts I see that you are on methotrexate, folic acid and prednisolone. Are you also on plaquenil? What about painkillers?

It is very important that you take the medication you have been prescribed at the dosage stated. The prednisolone is important. It is treating the effects of the disease, not just 'covering them up'. It will make things better and prevent further damage.

Lupus is incurable. That means you have it for the rest of your life. That doesn't mean though that all treatment is useless. It can help reduce swelling and pain, heal rashes, help heal damage in organs etc. In the days before medications to treat lupus 90% of people died in 5 years. Now with good medications, more than 90% can expect to live a normal life span. That is good news:p. It is important though that you comply with your medication regime, and if you don't understand what the purpose of your meds are that you ask - your doctor, your pharmacist, and us too if you like.

By all means find out about reflexology. Just bear in mind that it won't cure lupus, or even be a main therapy, but if you find it helps it can probably be used alongside your standard medication.

I am curious...where are you from, or what is your ethnic background? You mentioned Ayurvedic medicine - is this part of your cultural background?
see: http://en.wikipedia.org/wiki/Ayurveda

This is certainly not standard treatment for SLE. I would be very cautious about using any form of 'alternative' therapy without carefully researching it and checking with your rheumatologist if it is safe. Some herbal remedies can make lupus worse and others can have adverse effects when combined with certain medications.

When you see the rheumatologist the next time, ask about plaquenil. It is a very good medication for controlling lupus. It also has less side effects than prednisolone and can be safely taken for years and years. Unless you are allergic to it, it is really useful and worth being on.

Hang in there. Just take it one day at a time, and believe it will get better:blush:

X C X
 

·
Registered
Joined
·
25 Posts
Discussion Starter · #7 ·
:) Well, Im 100% european but have amost 3 years working in the hotel industry of the capital of Pakistan - Islamabad, and that being fairly close to India I got some information and clues about ayurveda and yoga.

I dont practice yoga or anyting though! Too lazy!:rotfl:

Had excelent results with ayurveda in the past treating my mum's hbp and my own other little defects and even without that I have great respect for ayurveda.

After geting all tests done ( im not yet d/x) I will go to the specialist in ayurveda to see what can be done.



Just for the record, Im not getting fooled by miracle cure that goes around the net:eek:
 

·
Registered
Joined
·
14,661 Posts
Hello Virginia

I am sorry you are feeling so low and there's no need to apologise for asking for help.
Nobody 'moans' here! We share the ups and the downs.
I see from reading your other posts that you are also on Methotrexate, so whether diagnosed officially or not you are being treated for rheumatic type disease or connective tissue disease. These are chronic conditions that have often been brewing for many years. There is no overnight remedy and it often takes time to find the right mix of medicines for each person as each case is slightly different. People respond differently and experience differing side effects for one thing.

You wrote

I am steroids 20mg/day and yesterday didnt took it in the morning, by evening I was a pack of pains and the night was even worse...
( also whats the effect of such a big dose? im on it for last one week and dr says he will take me out of these asap...)
[/color]

The steroids rapidly bring down inflammation and thus reduce symptoms.
Short courses are often used initially while waiting for other medicines to take effect which is usually several weeks or even months. They are also used to cope with major flare ups of disease and are essential treatment for some sorts of organ involvment.

20 mgs a day is a moderately high dose. There's a wide range of possible short term side effects and numerous serious long term side effects which is why steroids are used as little as possible

Today I feel depressed and saddened as I realise my body is as sick as before just that these medicines are covering some of the effects but dont treat anything at all.

I don't know what you mean by 'treating'. They aren't going to cure anything, because there is no cure for chronic diseases but they certainly are dealing with symptoms and reducing disease activity thus preventing permanent damage. (Hopefully!) They are the first step in stabilising the disease and even getting it into remission whether medicated or not.

For past 5 days Ive been going down rapidly and cant get rid of a very painfull shoulder pain.

Can you get in touch with your rheumatologist ? it's possible that the shoulder pain has nothing to do with lupus and needs further investigation. It's also possible that it can be treated separately, maybe with a steroid injection or perhaps you could do with further medication such as non steroidal anti inflammatory medicines.

It is rather puzzling that he hasn't started you on Plaquenil which is usually tried before Methotrexate and is a baseline medication for lupus whatever other meds are needed in addition.

These early days are usually very difficult. There's the relief at being taken seriously and at last knowing or having a good idea what's going on. But there are still fears for the future and the hard realisaton that this is a chronic disease.

What about reflexotherapy? Im going today to speak to them about some sessions, found really good things abt it and been told it works on lupus....

There is a very wide variety of complementary therapies and life style adaptations that can be very helpful in relieving symptoms, promote general health and emotional and psychological well being, and learning to live with the disease as best as possible.
The first question to ask yourself has to be " Will this do any harm?"
Reflexology won't, so long as you have a reliable practitioner. Stay right away from any practitioners who claim to be able to cure or who try to stop you taking medications. They could cost you your life. Tell your doctors of anything you propose to do and check any supplements or herbal medicines out for yourself, not believing anything that's written by people who stand to put money straight into their pockets by selling the product or services.
We have a Complementary Therapies section with lots of information and suggestions and there's a lot of very well informed experienced knowledge available here. It's a huge topic !

All the best and talk again soon - let us know what your doctor proposes.

Hugs
Clare
 

·
Registered
Joined
·
25 Posts
Discussion Starter · #9 ·
Well, just spoke to the doctor on the phone, he's been very nice ( at least of all!) and he increased my Xobix to twice a day and 4 panadol's - 2mrn, 2 eve - isnt that huge?!

Im going to see him on monday then Ill get more information and lets see and hope....until then my muscles from shoulders to elbows and hips to knees hurt like ****...he didnt seem bothered....


This site is the best painkiller!:p
 

·
Registered
Joined
·
4,444 Posts
Wow, your pain in elbows to shoulders and hips to knees sounds just like what my father recently experienced. He was diagnosed with polymyalgia rheumatica & put on 20 mg prednisone. He LOVES his prednisone though; but he does have skepticism of medications overall. But this medication is cheap and helped him so completely and quickly that he knows he needs it. Whatever you end up being diagnosed with, there is a good chance that you will feel better and live a full and good life. I encourage you to pursue any treatments that appeal to you and that you believe in that are deemed safe by you and your doctors.

Best of luck at your appointment on Monday.
 
1 - 10 of 10 Posts
Top