Imbruvica/Ibrutinib joint pain side effects - CLL Support

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Imbruvica/Ibrutinib joint pain side effects

ThreeWs profile image
12 Replies

Because joint pain has been experienced by patients on Imbru/Ibru and others have not had this side effect, it is wise to explore all possible causes.

I just found this article on a new virus to the US. It has a cool name "Chikungunya" and you thought new drug names were hard to pronounce;-) This virus presents with flu-like symptoms, fever and pronounced joint pain that can persist after initial symptoms subside. It is in the process of establishing itself primarily through 2 mosquito species in the Southern and some Mid Western portions of the US.

jama.jamanetwork.com/articl... or tinyurl.com/k53xlxp

Check on this virus if you are in countries other than the US and in warmer areas of the world. Looks like Canada and the UK may get a pass on this one for now, until we can get more CO2 into the atmosphere.

WWW

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ThreeWs profile image
ThreeWs
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12 Replies
AussieNeil profile image
AussieNeilAdministrator

Wayne, have there been any studies done looking at the correlation of patients reporting joint pain and different treatments, including Ibrutinib/Imbruvica as well as exposure to Chikungunya or other viruses? In Australia the extent of Ross River virus, which is known for causing painful joints, is spreading and there are many other causes. With regard to CLL related treatments, I'm aware of G-CSF sometimes causing bone pain, but nothing else immediately comes to mind.

When we've just started something new, the immediate tendency is to blame that for new symptoms, when it well could be something mundane. Hopefully it's the latter, but we do need to have this properly investigated so that we know whether it is to be occasionally expected and whether anything needs to be done in such instances.

It is still early days in the accumulation of experience with Ibrutinib/Imbruvica and even more so with other new drugs recently approved, so this post is most pertinent:

healthunlocked.com/cllsuppo...

Neil

Kwenda profile image
Kwenda in reply to AussieNeil

This is a subject that I posted about some months previously when Chikungunya had first arrived in St Maartin in the West Indies from East Asian sources. Most likely spread by cruise ships, or via regular flights to countries where it is epidemic.

Having lived for many years in tropical countries we were constantly on alert for mosquitoes and the dreaded Dengue Fever.

Dengue has spread dramatically through the West Indies since the 1960’s, due to the stopping of regular spraying and the withdrawal of DDT

Chikungunya is very similar to Dengue whose old name was breakbone fever..

There are five types of Dengue fever and there are no specific antiviral drugs for dengueis, no pill you can take to ‘cure’ or eliminate the virus. Also it stays within the body and can reappear in older age or when our immune system is compromised by the CLL.

Travellers with CLL should very very extra careful when in countries where mosquitoes can spread these viruses. Once infected the viruses can affect you for the rest of your life, with fevers and joint pains. The old name of ‘Breakbone Fever’ is still appropriate.

Useful links:-

en.wikipedia.org/wiki/Dengu...

en.wikipedia.org/wiki/Dengu...

en.wikipedia.org/wiki/Chiku...

cid.oxfordjournals.org/cont...

Dick

Kwenda profile image
Kwenda in reply to Kwenda

Additional new information.

Chikungunya Virus Imported into French Polynesia, 2014

The virus is spreading fast due to cruise ships and aeroplanes….

Chikungunya virus (CHIKV) is an emerging arthropodborne alphavirus of the family Togaviridae.

The most common clinical manifestations of infection with CHIKV are abrupt onset of fever, headache, back pain, myalgia, and arthralgia affecting mainly the extremities; in ≈50% of patients, a rash develops, and relapsing and incapacitating arthralgia is common.

The strain currently circulating in the Caribbean belongs to the Asian lineage.

In the Pacific region in 2011, a CHIKV outbreak was reported in New Caledonia. Additional outbreaks have been reported in Papua New Guinea in June 2012 , Yap State in August 2013 , and in the Kingdom of Tonga in April 2014.

In the Caribbean region, cases of CHIKV infection were reported in the French part of Saint Martin Island in December 2013, after which CHIKV rapidly spread to other Caribbean islands, including Guadeloupe, where by the end of May 2014 it had caused an estimated 23,100 infections.

On May 25, 2014, a healthy 60-year-old woman returned to French Polynesia after a 6-month stay with her husband’s family in Guadeloupe, where she had been in contact with family members who reportedly had chikungunya. On the first night after arriving back home in French Polynesia, she noted headache, transient high fever, and mild arthralgia of the knees. The next day, she sought care from her general practitioner for weakness, headache, and severe polyarthralgia (wrists, fingers, knees, toes).

wwwnc.cdc.gov/eid/article/2...

Dick

ThreeWs profile image
ThreeWs in reply to AussieNeil

Hi Neil,

To my knowledge there is no study as yet looking for specific reasons, such as viral agents, that might act with negative synergy in therapy to cause joint pain. There are so many possibilities that the cost to pursue those connections are probably prohibitive. That said, I believe we are on the verge of cheap testing technology using small amounts of blood to assess many facets of both cancer biology and dormant viruses that cause so much trouble when activated.

I was struck by so many reports of severe joint pain from CLLers in Online forums that I have not heard at OSU talking to many patients over the past 3 years. Given the degree of osteoarthritis in my body, I would have thought that I might be a candidate for joint/bone pain with or without Ibrutinib but (knock on wood) I have less pain now by far than prior to my CLL diagnosis in 2006. Pain that was crippling 15 to 20 years ago vanished after a year of starting Tai-Chi and was not an issue at all during W&W and throughout 3 treatment regimens including Ibrutinib.

I will ask more questions at my Oct. monitoring session at OSU.

WWW

MsChief profile image
MsChief in reply to AussieNeil

I wholeheartedly agree with you Neil that symptoms need to be evaluated irrespective of medications we take for cancer. It is also very important for patients to check with oncologist before taking new medications for pain or anything else.

AussieNeil profile image
AussieNeilAdministrator

Thanks Wayne for checking in Oct. if OSU have looked into what's behind these reports of joint pain. It would be interesting to know whether partners or other family members of those reporting joint pain are also having more problems than usual. Perhaps it's just because people on Ibrutinib are feeling so much better that they are just more active :) .

Neil

Ashraf82 profile image
Ashraf82 in reply to AussieNeil

Kindly give names to treat side effects of Chikungunya. Especially joint pain & swelling of thyroid glands which jams the next from movement.

Looking forward.

Regards.

Ashraf82 profile image
Ashraf82 in reply to Ashraf82

Medicine names pl

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Ashraf82

Have you had serological blood test to see if you have this? The common treatments are for symptoms things like Tylenol etc.

~chris

Ashraf82 profile image
Ashraf82 in reply to Cllcanada

Cllcanada,

No blood test is carried out. I heard that it is expensive.

However now I ll ask for this test.

Regards.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to Ashraf82

Its highly unlikely you have this..it comes with a great deal of illness... fevers etc

Here is accurate information about testing

cdc.gov/chikungunya/hc/diag...

Cllcanada profile image
CllcanadaTop Poster CURE Hero

December update... Chikungunya, cases now in Puerto Rico and a few in Florida

medscape.com/viewarticle/83...

Puerto Rico Study

cdc.gov/mmwr/preview/mmwrht...

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