Side effect

[Orchid47]

Good morning everybody

Since I added 10mg Leflunomide Arava to Predisone I suffer under

a dry cough and a dry thoat.

Has anybody else had a similar experience with this sparing Steriod drug?

Thank you for your reply.

Orchid47

[Jackoh]

Hi Orchid47. I have been on this drug now for 4weeks, into my 5th week. I have not had a dry cough and dry mouth but notice from patient's comments on the web that this can be one of the side effects. How long have you been on it? Have you found any benefits? Perhaps if it is really troubling you should bring it up with your Consultant Rheumy. Presumably you are having regular blood tests and testing of blood pressure to monitor the drug?

Best wishes Jackie x

[Orchid47 in reply to Jackoh]

Hi Jackie

I have been taking this drug for 4 months.

Chest X-ray OK as well as liver and kidney blood test

also ESR and CRP.

I have tappered down to 5mg with SDNS method.

Asked Rheumatalog if I should stop taking Arava

and she wrote back that she leaves it up to me.

I may stop for a week and see if I feel better.

Hope I also answered you questions.

Feel well

Orchid

[PMRpro Ambassador]

One of the online sites that lists the data sheet information says:

"Stop using leflunomide and call your doctor at once if you have any of these serious side effects:

- fever, chills, body aches, flu symptoms;

- white patches or sores inside your mouth or on your lips;

- chest pain;

- chest pain, dry cough, wheezing, feeling short of breath (you may also have a fever);

- pain or burning when you urinate;

- pale skin, easy bruising or bleeding, unusual... "

Have you told your specialist and what do they say?

[Orchid47]

Hi PMRpro

I wrote to my Rheumi that I have a dry cough and a dry troat.

She looked at my chest Xray and all my recent blood tests and

believes that it comes from something else.

I wrote back and asked her if she thinks, that I should stop

taking Lef, She didn't answer and so left it to me.

I have been able to lower to 5mg Pred.

I don't know if it is due to the benefit to Arava or thank to you

all who have interduced me to the DSNS method.

I had the last flare in November and went back to 10mg.

Have PMR since June 2014 and take Predisone since November 2014.

Orchid

[PMRpro Ambassador in reply to Orchid47]

Did it start soon after you started the leflunomide?

[Jackoh]

So frustrating this website - wrote a reply wouldn't let me do anything! Wouldn't send it but when I pressed cancel completed that transaction straight away!!

So here we go again!! Patience is a virtue!! Took a photo of my reply so I could just recopy.

Seems to be a bit of a cop out to say"leave it up to you!" What you wanted I presume was some definite guidance. I suppose being at 5 mg , although it is not where you want to be, is a low dose of Pred and therefore you could stay at this much longer using DSNS method to reduce, with or without the steroid sparer. If it is really causing you problems I think I would be inclined to see the Rheumy, face to face, if possible, so a joint decision could be made. If the decision is made to stop it then you are not on a very high dose of pred that is goingbto cause you major problems as you reduce hopefully, as some folk are on this dose, I believe, for life. Do hope you get some satisfaction. Let us know how you get on.

Notice as well that you said you might stop it for a week to see how you get on- don't know if a week would show you? , again Consultant should advise on this as it takes a recommended 6-8 weeks to be effective in the first place. Also read that it remains in your system for sometime after starting it so they did suggest "flushing" out of your system with another drug. Again Consultant I would have thought ( or GP?) should/ could give advice on this. Jackie x

[Orchid47 in reply to Jackoh]

Update

Hi Jackie again,

I received a phone call from my Rheumy from the hospital a couple of hours again.

I had to repeat all over again, cause, blood test results etc.

She said at the end that I should stop taking Arava for one or

two weeks and write her if the side effects have disappeared.

She said that there was no need to flash out the drug as I am

not a severe case and I am on a low intake of Predisone.

I should stay on 5mg and stop lowering Predisone for the moment.

Orchid47

[Jackoh in reply to Orchid47]

Well at least she has given you the advice you were seeking. Let us know how you get on.

Jackie x

[Orchid47 in reply to Jackoh]

Hi Jackie

How are you getting on with Leflunomide/Arava?

Do you have any side effects?

How much Predisone do you take?

I don t know if the drug helped me.

I am reducing 0.5mg a month,

Like they say slowly but surely.

I wish you good luck and good (better) health.

Orchid x

[Jackoh]

Thank you Orchid. I am on 19 mg of Pred but was having problems reducing even 1 mg a month using DSNS method. Kept having return of head pains- the Consultant had diagnosed cranial GCA , which is mostly in the back of my head and ears. I have been on Leflounomide for 4 weeks and I would say that relief from any pain has certainly got better. I have had a few blood pressure readings that have been quite high but on the whole these seem to be settling down. I am though on 20 mg of Leflounomide not 10 mg. My consultant said not to start reducing Pred until I have been on it for 8 weeks. I also have a slight tingling of the lips and tongue but waiting to see if this causes a problem or not. Do hope you get on OK. Will update on the Leflounomide journey as I go along. Jackie x

[Orchid47]

Please let me know how you are getting on with Leflounomide and if it helps you.

I also had elevated blood pressure and eye pressure, both have come down now with

taking less Predisone.

I also had this terrible cranial headaches 2 years ago.

I wish you a speedy recovery from this horrible illness.

Best regards

Orchid